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Acro Moods

Written by Michael Cookman on Thursday, November 15, 2012. Posted in Blog

Acro Moods

By Mike Cookman

 

One night I was sitting at my window and watching rain pour all over the neighborhood and for some reason I got to thinking about what life was like before I was diagnosed with Acromegaly, and a feeling of melancholy warmed through me and I thought of my early days with Borders and that warmth settled in around my eyes and I started to cry.

Before a diagnosis such as this you don’t think about the cost of prescriptions and medical bills and, above all, being chronically sick. Or, I didn’t, anyway.

I supposed it’s normal to look back fondly on the past, as the song goes “I’ve never seen a sight that didn’t look better looking back.” From Paint Your Wagon, in case you’re wondering.

Anyway, I don’t recall that I was one who looked back much, whatever was there was there to stay and I liked looking forward to the next day.

But now I am constantly reminiscing and seeing things as better than they probably were since I now have this illness.

Funny how moods can pop up now that may not have previously been there. I don’t recall ever being frightfully depressed the way I sometimes get now and I don’t remember just suddenly crying out of nowhere, which doesn’t happen often, but when it does it takes hold with a strong grip.

I’ve heard it said that this illness does that to you. But I have wondered if that is actually the case, or do we now display moods and feelings that were always there but now have reason to come out and play. That’s a fine line to draw, of course, but I find it difficult to believe that every Acromegaly patient is the same in these respects. As in—just because I get these crying jags doesn’t mean everybody else has to. I hope not, anyway.

I don’t think it’s the same for everybody, I think whatever happens, eh, happens. And there is no real explaining it.  I know some things are proven, so to speak, but that’s mostly the result of a lot of patients talking and saying, “yeah, I get that, too.”

So now others feel that something is wrong if they don’t “get that.”   If they don’t have sudden crying jags then they feel they are doing something wrong or something additional is wrong with them. I’m not saying we are all sheep; I’m pondering this and hoping that this all just goes without saying, as one might say.

The reason I started thinking about this is because I have heard a lot about isolation feelings among Acro patients, but I have not felt that myself. I feel lonely sometimes, everybody does now and then, but that’s not an Acro thing, as we say in the biz.

The isolation is a feeling some get because they feel they are alone and nobody really understands this oddball thing called Acromegaly, alone because at first it seems there are no other people on the planet with said illness and why me? Why do I have this thing when I don’t want to and I would like to meet someone who also has it—not wishing it on anyone, you understand---but there has to be someone out there!!

And I’m sorry, but I have never felt that, in fact I thought it was kind of cool that I had a rare illness, except for the fact that I had a rare illness.

But one person did have those isolation feelings and that is a fellow by the name of Wayne. He did not want to be alone so he created the AcromegalyCommunity.com and now lots of Acromegaly patients enjoy the company of other Acro’s and many friendships have been started.

When I do feel lonely that’s where I go, to hang with my Acro friends, that’s the future and the future is now.

A Public Stoning or A Milestone Birthday

on Monday, September 24, 2012. Posted in Blog

By Wayne Brown
www.AcromegalyCommunity.com


Birthdays are a funny thing.  From our youngest days, we know it is the one day of the year where we are guaranteed to be the star of the day.  In spite of this, or maybe because of it, people have very strong feelings about that day.  When we are young, and our parents are throwing the party, and our day is filled with balloons, cake, friends, family, and scads of presents; we think the day is our own personal national holiday, and we have another million of them to come.  But then we go and screw things up by getting older.

If you are like me, and you suffered the loss of a family member at an overly young age, while birthdays are cause for celebration, they can also be somewhat like a countdown.  I lost my father when he was 50 years old, and I was only 22.  Since that day, 50 is the big number that I see hanging over my head, much bigger and brighter now, as my 40th approaches this Sunday.  Birthdays are a mile-marker for many of us; a time for self-reflection or mental inventory of dreams and goals accomplished, anticipating, or changing.  One of my friends who just turned 31 was listing all the things he thought he would have had by 30, that still evaded him, mainly, wife and kids.  I was empathetic because I had that same feeling when I was turning 31.  I know, for some ladies it may be strange to hear that some guys have that on our checklist, but some of us actually do.

47904_10151264911151617_2123846082_nWe all have a checklist, a bucket list, a dreams list, or whatever you choose to call it; some list that may or may not be written down.  A list of dreams you wish to accomplish in your lifetime.  Making checkmarks on the list are very cool and offer a feeling of accomplishment and pride, but as the candles stack up, and the cake gets brighter, the light from those candles can seem to merely spotlight the unchecked items you most hoped to cross off the list.

I am extremely fortunate that many of my major items have been checked, or will be soon:  live overseas, write a book, and teach were some of my big check-offs.  All those have been accomplished, much to my pride and satisfaction.  Now I would like to write book two.  Adding items to the list is a necessary thing- it’s a showing that you have plans to be around for a while, and that you are making positive momentum.  If your entire list is checked off when you are 25, you need to dream harder, and expand the list!

Soon I will be checking off the goal of being married.  While I am doing it later than expected, the wait was worth it; and I am marrying my perfect woman- so it was worth the wait.  Now, when or whether we have a family, only time will tell, but if it does happen, it’s another checkmark, meaning I have two spaces waiting to be filled in with new life goals.

I have a bunch of other items on my checklist, but that is not necessarily the focus of this piece.  In my life, I have outlived multiple near-death experiences, a fairly harrowing accomplishment when you are still in your fourth decade of life.  One of the most traumatic things I have lived through, I did publicly; and surprisingly, I do not consider it to be one of my near-death experiences.  Being diagnosed with a (near) brain tumor when I was 32 changed my life perspective, and I would argue actually restored my freedom to live.  Before that, I was slowly being killed by this tumor, and I didn’t even know it.

Within days of starting medication, I felt like a new man, and every day was a little better.   Surgery would come six month later, and I knew almost right after I woke up that my life was mine to live now--- however I chose!  I could live it as a patient with a tumor or as a person who is living their life as freely as they wish, who happens to have a medical history.  It’s a difficult crossroads, and not everyone with medical challenges gets the chance to make this decision.  I did have that choice, and I chose the latter.  Like so many choices in life, it is the more difficult and more rewarding choice.

Since my surgery, recovery, fallback, readjustment, and stability, I have had several birthdays pass.  The next major milestone is mere hours away… Last year, when 39 hit, I was somewhat melancholy but accepting of it, inventorying all I had not yet checked off from my list yet.  While I had dated before, I never even came close to getting it right, and now 40 is on the way.  Oh well… I guess, if I am meant to spend my entire life single, I will make my life as amazing as possible.

Thirty-nine has been a fun year.  I guess it goes to the theory that there is no freer a man than one who has nothing to lose.  I am sure that this new attitude played no small part in readying myself to find the love of my life.  But even if I hadn’t… even if it was still me and the pups at home…  I had carved quite a great life for myself.  I had amazing family and friends who I loved, and they felt the same about me, I had created a cause for support that I turned into a charity that was helping people the world over, and I had a routine I enjoyed where I could still escape it all in my home, where my sanctuary was.

Now 40 is about to be in the rear-view before I know it.  The theme of the party, you ask?  “It’s the end… of his 30’s.”  Some fiancé, I know…  What can I say; her sense of humor is corrupted, broken, and just like mine!  She came up with this theme on one of our first dates, and so far everyone has thought it’s brilliant!

Seemingly hours after my 40th, I will be married.  What happens from there, I don’t know.  I bet you are thinking that now that I am in wedded bliss, I have shaken my birthday phobias.  Oh, au contraire.  Phobias are not necessarily rational fears, and a new piece of jewelry will not conquer them; but maybe I understand this one better.  Now that I will be married, the fear is even stronger, and the stakes are even higher.  When it was just me, if I died tomorrow, who would care, really?  Sure, my family and friends would miss me, someone would need to take over management of the charity, and someone would need to take care of the dogs.  As soon as all that has settled down, I felt like my life was effectively settled.  All paid up, no IOU’s.  Now that I am to be married, I have someone else to worry about!  Oh man!!!

This reality of responsibility was smacked over my head mere weeks ago, when my cousin, of only 43 years, was taken from the earth thanks to a massive heart attack.  No warnings.  No bright lights.  No sirens flashing.  He was there in the morning taking care of his wife and kids, went to work, laughed and joked with his friends, maybe had a light lunch, and by dinnertime, his wife was a widow and his kids lost their dad.  It is, to say the least, earth-shattering.

Now, I am not switching places with my parents or my cousin, but I think that it was cause for alert in me.  I needed to take inventory of my world/birthday view.  I needed to stop with the, if I go tomorrow, my life can be swept away with a little paperwork and some Kleenex.  I don’t know if I am going tomorrow, or in a hundred years, but I am going to seize every day.

cake457That said, if you think I am not watching the clock for my 44th birthday, and then my 51st birthday, you need to take off the rose-colored glasses, or at least tilt them a smidge.  My fiancé embraces every birthday as a huge party, and I adore her for that.  It reminds me of growing up with my dad, who used to celebrate “birthday month.” After he was gone, I just didn’t care as much about the day.  Sorry, I just didn’t.  It wasn’t the same.  And honestly, it wasn’t until my fiancé got so excited about her birthday that I really drew the connection in what made me change so much.  I kept asking her why she was so excited, and her answers were so simple, of being with friends, enjoying another year, and of course delicious cake!  Hmmm… Maybe I needed to take a longer look at this birthday thing, focusing on the excitement, rather than anticipating what birthday party I would not be attending.

We were talking this past weekend about upcoming birthdays, we were joking about the 40th, and naturally for me, 50 was on my mind.  As the conversation wound that way, my eyes got a little wet.  I said that to me, the 51st was far more important than 50, so she asked the logical question: should the big party be 51 instead of 50?  I said no.  Let’s make 50 a bash, so we can enjoy it.  She smiled and said that was fine, and that 51 would be a fantastic birthday with family around.  I smiled and agreed.

Dreading a milestone birthday isn’t a negative connotation, as far as I am concerned.  Yes, it is just a number, but we only get a certain amount of those numbers, and I am really enjoying the ride, so why would I want to get off?  Have you ever been to a great show where, at intermission, you are raving about what a great show it is and how you want to see the show go on and on?  Some of us are blessed and cursed with a hyper-awareness of mortality.  We are not more or less emotionally healthy than you are, and you needn’t feel the compulsion to correct us.  I love my life, and I hope I live for another hundred years.  That said, I know it is fairly unlikely.

I would love to have a family, and watch my great-great-grandchildren get married.  Fairly unlikely, but we will see what medical technology has in its future.  This skepticism doesn’t mean I am fatalistic or unhappy, quite the contrary.  I love my life and wouldn’t trade it with anyone at all.  All it means is that I have a greater awareness of lifespan than you might, at least at this point right now.  And we are both right, for how it works best for us.  Please don’t try to force my eyes closed, and I will not try to pry your lids open.  We both know what is there, and both of us have our own systems for managing it.

Whatever happens happens, and obviously we have no control over it.  That said, I am still going to keep one eye on the clock… at least until I break the ceiling of my 51st birthday.  If you understand all of this and it makes sense to you, you are welcome to come to the party.  If you want to fight me on whether I am right for feeling the way I do, I am eating your slice of cake!

Learning To Love Through Others' Eyes

on Friday, September 21, 2012. Posted in Blog

Labels, Love, and Self-Actualization --- A Worthy, But Difficult Trip

It’s funny how life can define you, even when you fight against the definition it forces upon you.  It was November of 2004 when I was diagnosed with a rare disease.  Acromegaly, my new diagnosis, was a rare tumor that grew in my pituitary.  In other words, I was told that I have a tumor in my head only nine years after I lost my dad to brain cancer.  No matter how hard I fought it, with one quick diagnosis, all of my visions of self were being redefined against my will.

From the time we are old enough to crawl, we are labeled: social or shy, generous or stingy, gifted or challenged…. And on it goes, for the rest of our lives.  It’s really easy to look at a loved one, friend, or stranger and give them a label- to categorize them in a way that we can most efficiently classify them; a prism with which to best see, hear, and interpret all the information they share with us.  That said, looking at our own lives through that same critical lens can be incredibly difficult, if not impossible- because we are forced to really analyze the accuracy of the labels we have given ourselves.

Frequently, the meanest, most hurtful labels we are given: loser, failure, fat or scrawny, etc. are given to us by our own self-consciences, and those seem to be the most difficult to shake, because they are self-imposed definitions.  Sometimes the easiest way to shake these derisive values is to find someone who we can trust enough to convince us that our own self-defined derision is unworthy, and that we are really the good people we set out to be every day.  It is likely that the person is your best friend, and hopefully also your spouse.

I lost my father when I was 22-years old, and spent those key years that most people use to set up their adult lives basically playing surrogate husband to my mother.  Meanwhile, my tumor was running rampant in my body, without my knowledge.  While I am at peace with my past now, I was secretly a little angry at my mom, because while my friends were finding the loves of their lives, I was driving her from pillar to post on the weekends.

Fast forward to my diagnosis in 2004, it was my mom’s strength that helped me deal with my diagnosis.  I was happy to have her to keep me strong, but it was during this time that I started to realize that I was probably going to die alone.  Who the hell wants a guy who knows that they have a tumor BEFORE they commit to a life with you?!  I convinced myself I was okay with that, and I was damn good company, and if someone didn’t see that, it was their loss, because I really liked hanging out with me!  While I truly believed that, it didn’t mitigate the loneliness.

It’s funny… as I grew older, I developed a core group of friends who I enjoyed hanging out with, but I still felt alone.  Only an adult single person can identify the feeling of being surrounded by people you love, and still feeling totally isolated.  I loved my friends, but I still kind of felt saddened that a big part of me was missing.  It’s not that I needed my identity to be wrapped up in someone else, but I grew up in the perfect home.  My parents loved each other, and when I say loved, I mean they looooooooooooooooved each other.  Sadly, a sentiment rarely found today.  My parents had their own lives, but they were always happiest when they were together.  They were the couple who actually did fall more in love every day.  That’s all I wanted, nothing too much- right?  That was simple enough to find.  Ha!

I tried it all.  Bars. Meh.  Religious venues.  Not my scene.  So I turned to the world of third party introductions.  The first time I attempted to meet someone, I remember it was a Thursday night.  The newspaper was sitting on the couch open to the singles ads almost daring me to try (it was the 90’s… what do you want?!).  So at $2 a minute, I gave it a shot.  Nothing…  except a huge phone bill.  Oh well.  I tried.  When the internet came about, I think I tried every online service, although I would never tell my friends.  At the time, meeting someone on the internet seemed to be reserved for chat board people discussing Dungeons & Dragons, and crazy people.  I didn’t feel that I was either.

What did happen was that I became a first date ninja… I could go on a first date without anyone ever knowing, sometimes even the girl I went out with!

I was starting to add new labels to my self-defined collection: loner, loser, single-for-life, and after I knew of my acromegaly, diseased.  When do you tell someone?  I tried all different times, and it seemed like the time I picked was always wrong- but I didn’t want to hide it from them either, since it is part of who I was, right?  I would get close enough to a person to finally feel brave enough to tell them about my condition, and they disappeared in a cloud of dust like the Roadrunner did when Wile E. Coyote was just about to catch him.  Oh well.  I decided that maybe I wasn’t meant to find my rainbow, and unwillingly grew to be accepting, or at least resigned to it.

The sad reality is that not everyone will find their rainbow.  The sadder reality is that some people are married and suffering because they are not enjoying their rainbow.  You can see it in their eyes, and hear it in their voices.   Whether you are single, or married and miserable, you need to find a way to make the best of your situation.  No, it’s not easy, but misery will never breed happiness.

If you are single, focus on what makes you think you are pretty great.  If you are in an unhappy relationship, get out before it’s too late.  Pre-wedding jitters?  That’s your brain telling you something doesn’t feel right about this version of forever.  If you are in a marriage with someone you don’t love, work to remember why you fell in love with them.  Divorces only make divorce lawyers happy.  They will help you fight to your last dollar.  Focus on the original spark, and hopefully that will reignite the flame you once had for each other.

I am one of the lucky ones though.  The ability to be self-reflective, while painful, offers insight.  I saw my friends in unhappy relationships, and I saw my friends who were married to their best friends.  I decided that I was going to either marry my best friend or die alone, because to be married to someone I hate is worse than dying alone.  While I didn’t always talk nicely to myself, I thought I was a pretty nifty guy, worthy of someone who would treat me as such.

So back to the internet I went.  In one last futile attempt to find my special someone, I decided to place an ad on another website.  I met a lot of nice people who were absolutely horrible matches for me, but I enjoyed the self-discovery, and figuring out more of what I needed to make me happy.  Then, in January, I emailed a girl who I thought looked and sounded pretty interesting.  We exchanged several emails, each one longer than the previous, until they were becoming chapter-length.  While this excited me, I have been down this road before, and tried to temper my excitement.  I agreed to call her on a Tuesday evening after the class I was teaching ended.  We talked from about 930pm until about 4am.  The next day, we talked again, starting at 8pm, and I joked that we definitely wouldn’t talk till 4am tonight.  That was a lie.  Still, the phone is easy.  In-person is what counts.

Our first date was only about two weeks after we were introduced online.  I was anticipatory, but still somewhat detached; after all, I had been here before.  Our first date went until the wee hours, as did our second date, the next night.  In fact, since our first date, the only days we haven’t shared the same space is when one of us is traveling.

I first mentioned the idea of shopping for rings a mere ten days after we met.  While, in hindsight, it seems a little crazy to both of us, we both knew it was right.  Somewhere in my subconscious I knew I found my best friend.  I realized I had loved her days before when I finally got the courage to tell her about my disease.  I was so nervous that I couldn’t even look at her as I told her.  I finally spit it out, and she said words I will always remember:  “I was wondering when you were going to tell me.”  Finally, someone who saw me for me!

After I friended her on facebook, apparently, someone made reference to my book, and she bought it and read it.  I paused for a second and immediately replied, “so do I owe you the ten bucks now?”  She is sarcastic, funny, and beautiful.  She sees beyond all my faults, and I am amazed that she is without any faults of her own!  (She may read this, call me and I will tell you all her faults!)  This is our life.  We joke with each other before anything else.  In fact, mere moments before we told each other we loved each other for the first time, we were mocking each other.  Our first thought, when things go wrong, is to make jokes.  Laughter helps to mitigate pain.

I am not going to die alone.  I am going to spend the rest of my life with my best friend, not because of my disease, but in spite of it.  It’s not because she was handed to me, I had to fight for her, and be willing to not settle for less than I deserved.

Life without any real challenges is hard enough, and no one is promised a rainbow, but one thing I learned is that the rainbow will not come looking for you.  I was always told that love comes when you are least looking for it.  While it’s kind of true, because no one wants to date the person who reeks of desperation, if you aren’t out actively pursuing your rainbow, it aint gonna find you.

My disease sucks.  And some days are worse than others.  But I know that I am not fighting alone, and that makes every day easier.  If you are single, you don’t need to wear your disease like a badge.  NOT a first date conversation.  But it’s also not something you should spring on your spouse on the honeymoon.  If you are single and without disease, don’t be afraid of us.  Find out about what the person has.  If you can live with the symptoms and you really love the person they are, that is true love- enjoy it.  Guess what?  The human body is a flawed system and it will break down--- yes, even yours!  It’s a lot easier to have someone in your life who can understand and will look out for you.  If you are married, whether its peaches and cream, or the cream may have started to curdle, embrace that person!  Scoop the curdle chunks out and figure out how to see that person the way you did on your wedding day.

I remember when my fiancé’s best friend said to me, “I can’t wait for us to grow old and smelly together!”  That was the first time it really hit me.  My life was forever changed- for the better.  My fiancé and I both LOVE each other, and adore each other’s friends.  It’s not easy to find, but it’s worth the patient fight to find it.  I love her, and spend every waking moment with her trying to make her happy beyond her wildest dreams, and here’s the kick--- she does the same for me.

We don’t fight.  Not because we always agree, or one of us is always surrendering; that is not a relationship; that is sheer dominance.  What makes us work so well is that we both compromise.  If she wants something I am indifferent to, I will do it, and if I want something she is indifferent to, I get it.  If we both have different, passionate desires, we find the middle- and that is where the happiness lies.  No one walks away feeling like they lost, or the other person owes them one.  If you are keeping score, the loser will always be quietly unhappy.  Throw away the scorecard, and embrace the middle ground.

I know that 50 years from now, looking at her in the morning will still make me smile, and seeing her all dolled up will still take my breath away.  My disease is still part of my life, and always will be- but it is a small part of a very large picture.  The labels I see today are the ones that she has helped me see:  good person, generous, loving, kind, and funny.  I know that she appreciates the labels I have helped her see, and they are identical.

Thanks for everything, babe.  You are my perfect, forever.

Together We Can Cure the Loneliness

on Sunday, September 09, 2012. Posted in Blog

Acromegaly Community is launching a new campaign to help "Cure the Loneliness"

This campaign is based around the fact that hundreds of people get this disease every year and feel like they have no one to turn to, but that's where Acromegaly Community comes in.

It is our mission to provide an emotional and communal supprt network for people touched by Acromegaly. We offer a central location for medical issues including: surgery, medication, radiation, and post diagnosis support. Most importantly, we work to provide a network of emotional support for acromegaly patients, their friends and their family.

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So How Can You Help?

By creating your fundraising page above and raising at least $5, Acromegaly Community will send you one of our famous blue   bracelets (see below). For every additional $5 you raise, we will send you another bracelet so you can hand them out to your donors.
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Don't forget to take pictures of you and your supporterd wearing the bracelets and post them to your fundraising page and then share them on Facebook, Twitter and email.


Simply click on the bracelet to get yours, and join in the fun!

Tanya Angus Has Hope in Growing Battle Against Gigantism

on Saturday, September 01, 2012. Posted in Blog

 

For the first time in a decade Tanya Angus, who is fighting a life-and-death battle against gigantism, has stopped growing. At seven feet and 400 pounds, she now has some hope.

Angus, a 33-year-old from Las Vegas, was diagnosed with acromegaly, a rare pituitary disorder that causes the body to produce too much growth hormone. It affects about 20,000 Americans.

Since 2010, when ABCNews.com first told her story, Angus has grown an inch taller and gained 30 pounds. Before the disease began its destructive course, she was only 5 feet 8 inches tall and weighed 135 pounds.

But for the last year, she has been treated with a drug that has kept the levels of growth hormone in her blood in the normal range.

"This is such good news," Angus told ABC's Las Vegas affiliate KTNV.

Angus has grown so large that she can barely walk and a swimming pool is the only place where she is without pain because she can float there.

VIDEO: Tanya Angus is making progress with drug treatment for Acromegaly, a rare pituitary disorder.
ABCNEWS.com
Hope for Tanya Angus Watch Video
Possible Cure for Woman With Gigantism Watch Video
No Surgery for Woman with Gigantism Watch Video

"It feels so, like, liberating," said Angus, who is being nearly crushed by her weight. She needs constant care from he family and friends.

Angus has a tumor on her pituitary gland but radiation and three surgeries have done nothing to stop her dangerous growth. One 13-hour operation nearly killed her, and another caused a stroke that took away most of her hearing.

As her body gets larger, so do her other organs. Her heart, lungs, joints and other parts of her body have also grown under the strain of this rare disease.

Doctors say it is one of the worst cases of acromegaly that they have ever seen. Her mother, Karen Strutynski, says it is the "worst in the world."

About 95 percent of the time, the condition is caused by a non-cancerous tumor on the pituitary gland, according to the Pituitary Network Association. Such is the case with Angus, but her tumor is wrapped around her carotid artery, and is inoperable.

Dr. Laurence Katznelson, professor of medicine and neurosurgery at Stanford University Hospital in California and medical director of its pituitary center, did not treat Angus but serves as medical advisor to the onlineAcromegaly Community.

"Everything gets thicker and the facial features become abnormal," he told ABCNews.com last year when Angus was speaking at a national conference.

Fluid accumulates in the body, causing stress on multiple systems in the body. Patients are more prone to cardiac conditions, hypertension and diabetes.

"They are in a lot of pain because they get severe headaches and their joints can be swollen and develop premature osteoarthritis," he said. "Their mortality rate is two to four times greater than the general population."

The disease is not hereditary and happens, "sporadically," he said.

 

"There is such a slow onset," said Katznelson. "Patients don't present with, 'I am getting bigger.' You look at photos and their history over 10 years and you see it. But when we look in the mirror every day, we don't see the changes."

At 21, Angus was a beautiful young woman who rode horses, danced and had a boyfriend. But one day, she noticed changes in her 5-foot-8-inch frame: Her shoes didn't quite fit, her jeans were too tight and her hands got bigger.

"She was perfectly normal, but by age 22 she had grown three inches," said her mother. "Nobody knew what was going on."

Tanya Angus
Courtesy Tina Valle
Tanya Angus (right), now 31, with her... View Full Caption
Hope for Tanya Angus Watch Video
Possible Cure for Woman With Gigantism Watch Video
No Surgery for Woman with Gigantism Watch Video

Angus, who lived in Michigan and was a supervisor at a Walmart, began to worry when even her face and head got larger. Her bosses also noticed -- and fired her. And her boyfriend left when his parents began to ask, "Is she a man?'"

Tanya decided to return home in 2002. When her sister picked her up at the airport, she "freaked out," because she didn't recognize Tanya.

The doctor took one look and diagnosed acromegaly.

But now, say Angus and her mother, new treatments are promising. "This gives us renewed hope," said Strutynsk.

And Angus, who has agreed to be part of a documentary on acromegaly, says she too feels optimistic, and encouraged by others.

"I read emails that people send in saying, 'You're my inspiration,' or, 'You are so strong.' If I am helping other people, I feel I can do anything."

For support, go to Acromegaly Community.

For more information on Tanya's story go to her website.

Girl with Acromegaly Sues NHS

on Thursday, August 30, 2012. Posted in Blog

By Emer Grey
http://pituitaryademoaner.blogspot.com

A story broke some time ago about a young lady with acromegaly who sued the NHS (National Health Service in the United Kingdom), and won. I've been meaning to write about her for a while but I wanted to take the time to create an interesting and informative post contrasting her case with that of Kane Gorny. Alas, I have not had the time, so you'll just have to deal with a dull and uninformative post instead. Hurrah!

The story is this: Kate Woodward, an aspiring actress, developed acromegaly (i.e. a pituitary tumour secreting growth hormone, which lead to uncontrolled growth of her body) as a child, which went untreated between 2001 and 2005 as medics failed to spot the condition. She attained a final height of 6'5" aged 20, and sued the NHS for £2 million. She was awarded compensation of £1.3m.

Incidentally, the award for "least sensitive headline about this story" goes to Healthcare Today UK, which went with "Freak Growth Woman Sues NHS".*

Nice.

Her case for being awarded this level of compensation was that, as a result of her condition being untreated for so long:

- Her height and "ugliness" meant that she could no longer go into a career as an actress.
- She has psychological difficulties and feels like a "freak" because of her condition.
- She has significant problems with her bones, knees and teeth, and cannot buy normal-sized clothes.
- The condition affected her childhood, schooling and friendships.

And, most significantly:

- She wishes to receive all future treatment in the private sector.

Now, not long after this story was first brought to my attention (by a colleague, thank you!) I noticed that it had also popped up as a topic of discussion on the Pituitary Foundation's forum. For those of you who don't subscribe, one member created a poll entited something like "Should Kate Woodward be ashamed of herself?" The results of the poll were overwhelmingly that she should (although in fairness by "overwhelmingly", I mean "there were four votes in total").

Why the anger? Surely she has a fairly good case, right? Undoubtedly, when a doctor is presented with a girl who measured 5'9" at just eleven years old and keeps growing, you'd hope that it wouldn't take four years to just Google it and think "hmm, maybe we should rule out acromegaly". Although we can't know that faster treatment would have effected a cure, it might have controlled or reduced the symptoms. She will have to live with injections and monitoring and joint problems and feeling self-conscious for her whole life.

BUT.

The problem is that this is not, actually, an unusual case - at least, not within the magical world of pituitary tumours. If every person with acromegaly decided to sue the NHS for delayed diagnosis, it would be one hell of a bonus day for lawyers. If you threw in people with other often-missed pituitary conditions like Cushing's Disease and TSHoma, it would probably result in a sudden UK lawyer shortage as they all retired to small Caribbean islands. If you based the level of compensation awarded on the number of years the condition went undiagnosed, the small Caribbean islands would probably reinvent themselves as world financial hubs.

I exagerate. But the mean length of time from onset of symptoms to diagnosis of acromegaly is,according to this MedScape article, around 12 years. Even if that estimate is too high, the point is that pituitary tumour conditions can be hard to diagnose, and they are often missed because they're rare enough that doctors don't see them often, and often don't expect to see them either. Four years to diagnose a patient with acromegaly is, sadly, not uncommon. I first showed symptoms of my TSH-secreting pituitary tumour aged 17, and I didn't get a diagnosis until I was 22. (In case you're bad at maths, that's five years). Even after my superfast heartrate made it clear that Something Was Wrong, it took a year to work out what that something was.

So if there's a slight lack of sympathy from other acromegalomaniacs,** it could be because they're thinking "Damn, £2m! Wish I'd thought of that." 

But I doubt it.  And I'm not just saying that because they're bigger than me.***

Now I want to note right off the bat that where there is evidence of medical negligence or it takes a long time to get a diagnosis, you should complain. Vociferously. You should complain in the hope that procedures can be improved. Otherwise there's nothing to stop future patients from suffering through the same tortuous process to find out what's wrong with them. But there's a difference between seeing a problem, taking a complaint as far as necessary to fix that problem for future patients, and just suing to get as much as you can out of them. Through the normal complaints process, the hospital in question offered Miss Woodward compensation of £700k, no court appearance required. If she lives to the age of 90, that would be £10,000 medical expenses covered every year. Additionally, according to the Daily Mail, which I personally take with a pinch of salt and under the supervision of a doctor, the hospital trust had already spent £288,000 on Miss Woodward for "treatment, dental care, holidays and special footwear".

Even the £500k difference between what she was offered and what the court awarded is a big chunk of money. £500k that could have gone towards treating other patients. I need somatostatin analogue injections (probably much like those Miss Woodward takes), and if you've been reading this blog lately, you'll know that it is proving slightly tricky to persuade someone to fund them. £500k could pay for 666-and-a-bit doses of those injections. Which doesn't sound like that much, until you realise that each dose lasts for a month, so £500k worth of injections would last me forfifty-five years. And six months. Assuming I needed them continuously. And of course by that point I would be 79-and-a-half, so chances are I could be dead by then anyway.

And here's the thing. If the NHS messes up and, as a result, you end up incurring further costs in your daily life (eg. you're a professional tap dancer going into hospital for an appendectomy, and you wake up with a leg missing) then yep, you should get compensation and if they won't agree to pay it, sue them with my blessing and encouragement. If the clinical negligence of your child at birth leads to brain damage which will affect that child for their entire life, then sue for the money needed to support them. And if/when the NHS messes up so badly that it becomes a danger to other patients, and you follow through that complaints process and nothing changes, sue them until they sit up and pay attention and mend their ways.

But I am somewhat uncomfortable with suing the NHS for the loss of a career that did not yet exist, and for the costs of having exactly the same treatment as the NHS provides, but done privately. (I'm also intrigued by the concept, since she presumably did not have private health insurance before diagnosis and consequently insurers would be unlikely to cover her pre-existing condition?).  I've had an MRI scan done by a private provider and done by the NHS and the experience was almost exactly the same - except the private hospital was a lot harder to get to on public transport.

I guess in some way I think that when the NHS messes up, part of the compensation is the NHS. The very fact that you live in a country where you don't have to worry about the cost of healthcare means that when the NHS makes a mistake, it - not you - ends up bearing any increased costs of your care as a result of its mistake. Perhaps in some countries when a patient gets a hospital-acquired infection, their bill from the hospital is increased - but in the UK, if a hospital gives you an infection, it has to foot the bill to try and fix it.

But it also means that when you sue an NHS hospital in the UK, you're not taking lobster off the table of a fat cat investor (well... not yet... comments about Mr Lansley on a postcard, please). You are taking money away from that hospital. Any sensible hospital trust will have a big old stash of contingency fund to cover the cost of lawsuits, but I still confess I'm uncomfortable with the idea of suing the NHS for anything less than an ironclad reason, because that money could be put to better use. It could be used to help treat someone just like you. 

I don't think Kate Woodward is a bad person, and I don't think she should be ashamed of herself. I simply don't have sufficient details to form an opinion on this case, and she may well be entirely justified. But she sparks off an interesting debate. That's my opinion. What's yours?

______________________________________
*I noticed Jon Danzig, a journalist with acromegaly, took them to task for this in the comments section of the article, good on him!

** I don't know what the collective noun for "a group of people with acromegaly" is, but it should really be this.

***Common misconception: people with acromegaly only become very tall if the condition develops during childhood/adolescence. If it develops in adulthood, it will lead to bone and soft tissue growth but usually won't increase height much, if at all.

Call For Volunteers

on Friday, August 17, 2012. Posted in Blog

Your Community Needs Hands!

Acromegaly without acral changes: A rare presentation

on Tuesday, July 24, 2012. Posted in Blog

From http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354862/

Abstract

Acromegaly is diagnosed clinically by the universal presence of acral enlargement and typical coarse facies. We report a short, elderly female developing acromegalic facies for last 10 years without acral overgrowth. She is a patient of primary hypothyroidism, well controlled for last 20 years. Acromegaly was proven by high level of serum insulin like growth factor-1 (IGF-1) and elevated and nonsuppressed level of growth hormone (GH), with other hormonal profile being undisturbed. She had mild insulin resistance and systemic hypertension in absence of any visual field defect. Magnetic resonance imaging (MRI) of brain revealed pituitary hyperplasia without any detectable adenoma. No source of ectopic secretion of GH or growth hormone releasing hormone (GHRH) could be localized. Therefore, atypical presentation of acromegaly needs high degree of suspicion even if some of the common features are lacking. Here, we have biochemically proved acromegaly with typical facies, short stature but no acral overgrowth and pituitary adenoma despite longstanding disease activity, and thus eluding diagnosis for years.

Keywords: Acral enlargement, acromegaly, pituitary hyperplasia

INTRODUCTION

Acromegaly is the syndrome caused by growth hormone (GH) hypersecretion as a result of somatotroph adenoma in majority and is rarely due to extrapituitary ectopic lesions. Its very slow but progressive disease activity usually leads to delay in diagnosis for decades. The clinical manifestations ranging from soft tissue swelling, acral overgrowth, jaw prognathism, hyperhydrosis, frontal bossing, arthralgia to florid arthropathy, diabetes, hypertension and cardiorespiratory failure are present in patients in variable combinations. We report a lady with acromegaly without typical acral overgrowth even after 10 years of disease activity, which is a rarity in literature.

CASE REPORT

A 50-year-old postmenopausal lady presented to us with headache, increased sweating and exertional breathlessness since last 10 years. The suspicion of acromegaly was based on her phenotypic profile with coarse facial features including prominent supraorbital ridges, enlarged fleshy nose, thick lips and oily skin. These facial changes gradually developed over last 10 years as discerned by serial photography in the lady's archives [Figure 1]. She was obese with short stature. She was on 50 μg daily replacement dose of thyroxin since last 20 years when she was detected to be suffering from primary hypothyroidism. She also had positive history for arterial hypertension since last 5 years. She had blood pressure of 160/90 mm Hg and was taking 5 mg daily dose of amlodipine on admission.

Figure 1

Figure 1

Acromegalic facies

Despite typical facial features, there were points that did not support the diagnosis of acromegaly. She did not have acral enlargement, frontal bossing, jaw prognathism and macroglossia. Patient also denied the enlargement of distal extremities with progress of time [Figure 2].

Figure 2

Figure 2

Short hands and feet without typical acral enlargement

Biochemical diagnosis of acromegaly was made by measuring insulin like growth factor-1 (IGF-1) level and glucose-suppressed GH estimation. IGF-1 level was 913 ng/ml (normal range: 94–252 ng/ml). The basal GH was 11.2 μg/l, and 60 minutes and 120 minutes GH levels after 75 g oral glucose load were 9.6 and 5.4 μg/l, respectively. Skull X-ray showed slight enlargement of pituitary fossa and thick calvarium but no prognathism and frontal bossing. Magnetic resonance imaging (MRI) of brain revealed diffuse enlargement of pituitary suggestive of pituitary hyperplasia, but no adenoma was detected [Figure 3]. Radiological findings as evidenced by the X-ray imaging of extremities of the patient were also not suggestive of acromegalic soft tissue changes. The findings were: heel pad thickness: 20 mm (>21.5 mm in acromegalic women), sesamoid index: 30 (>32 in acromegalic women), width of second metacarpophalangeal (MCP) joint: 2.1 mm (>2.5 mm in acromegalic women), soft tissue thickness (width) at proximal mid phalanges: 24 mm (>26 mm in acromegalic women), tuftal width of 3rd finger: 9 mm (>10 mm in acromegalic women) [Figure 4].

Figure 3

Figure 3

T1-weighted image of MRI brain (coronal view) shows large sella with pituitary enlargement
Figure 4

Figure 4

X-ray of both hands: Radiological measurements do not fulfil the diagnostic features of acromegaly

Detailed physical and skeletal examination revealed the following: short stature with a height of 142 cm (less than 2.5 percentile for Indian women), large head (head circumference 55 cm), arm span equal to height, ratio of upper segment and lower segment 0.97, ratio of forearm to arm length 0.77, forearm:hand length 1.4, acral length 15.5 cm and weight 62 kg. Measurement of body proportions did not match with common forms of skeletal dysplasia; neither had she any deformity related to such dysplasia. No cranial, spinal, epiphyseal and bony changes seen in skeletal dysplasia were present in this case as evident by skeletal roentgenograms. She did not have any visual field defect on automated perimetry.

She was found to be euthyroid [free T4 1.1μg/dl with thyroid stimulating hormone (TSH) 0.78 μIU/ml on 50 μg levothyroxin]. Her fasting plasma glucose was 88 mg/dl and 2-hour post 75 g glucose load plasma glucose was 159 mg/dl, signifying impaired glucose tolerance. Levels of follicle stimulating hormone (FSH), luteinizing hormone (LH), prolactin and 9AM cortisol were 54.64 mIU/ml, 20.39 mIU/ml, 6.10 ng/ml and 14 μg/dl, respectively, all being within normal limits. Fasting serum insulin level was normal (4.17 μIU/ml), but 2-hour post 75 g glucose insulin level was mildly elevated (89.6 μIU/ml) indicating mild insulin resistance. C-peptide was within normal range (3.45 ng/ml). Search for extrapituitary ectopic hypersecretion of GH or growth hormone releasing hormone (GHRH) done by high-resolution computed tomography of chest (HRCT thorax) and abdominal scans was, however, unrewarding. Endoscopic and colonoscopic search also failed to detect any possible lesion. The patient was asked to undergo somatostatin scintigraphy nuclear scan which she could not afford. She had mild concentric left ventricular hypertrophy with diastolic dysfunction. Her lipid profile was within normal range.

DISCUSSION

The case reported here is exceptional due to the absence of few extremely common clinical associates of acromegaly in the patient. The frequency of clinical features varies. As reported by previous studies, relative frequency of acral enlargement is 100%, hyperhydrosis 65%, headache 55%, hypertension 32%, diabetes 27% and visual field defect 6% only.[] Acromegaly without acral enlargement in spite of its longstanding disease activity has never been reported earlier, to the best of our knowledge.

Clinical features similar to acromegaly are rarely seen in few other medical conditions like pseudoacromegaly and congenital hypothyroidism. Cases of pseudoacromegaly have been reported due to hyperinsulinemic state, primary pachydermoperiostosis and long-term minoxidil use without elevation in GH and IGF-1 level.[] Similarly patient with congenital hypothyroidism simulating acromegaly has also been reported as a rare clinical picture.[] She did not have any of the clinical pointers suggesting such abnormalities.

The most common cause for acromegaly is a somatotroph (GH secreting) adenoma of the anterior pituitary gland. Acromegaly resulting from ectopic GH or GHRH hypersecretion is exceedingly rare (<1%).[] So, ours could theoretically be a case of GHRH secreting acromegaly. History, clinical examination and limited radiological examination like HRCT thorax and computed tomography (CT) pancreas did not point to any GHRH producing tumor. GHRH assay could not be performed due to the assay not being available commercially in India.

In the absence of documented pituitary adenoma, the patient has been offered medical therapy in the form of somatostatin analogue about which she is yet to decide.

Theoretically, one can argue a longstanding undetected and untreated primary hypothyroidism in this patient, causing pseudoacromegaly involving face sparing extremity, more so as she is having short stature. However, hypothyroidism in this patient causing pseudoacromegaly is highly unlikely because of the following facts. First, she had normal reproductive life being a mother of three fully normal children, with her last child birth at 27 years of age. Then, repeated GH assays done in other hospitals revealed persistent elevation and nonsuppressibility for last few years which, however, was not addressed. Lastly, her primary hypothyroidism was detected at the age of 30 and was adequately controlled thereafter, pointing to the fact that she had had primary hypothyroidism from her late twenties which is thereby very unlikely to produce acromegalic facies for last 10 years only. The patient had been attending endocrine outpatient departments of other state hospitals since the year 2000, but a definite diagnosis eluded her.

The instructive point regarding the case is that absence of typical acral overgrowth and pituitary adenoma on neuroimaging eluded her definitive diagnosis of acromegaly despite having typical facial changes and biological GH hypersecretion and despite attending superspeciality referral hospital outpatient departments for years, more so, with some known metabolic complications of GH excess like hypertension and mild insulin resistance. Generally, diagnosis of acromegaly and its cause is easy. But in odd cases, high index of suspicion is crucial so that atypical presentations do not miss diagnosis and are not left untreated.

ONE TIN SOLDIER

on Wednesday, April 18, 2012. Posted in Blog

After I was out of the hospital from having brain surgery I was told not to go back to work for two weeks, and I couldn’t travel because the doctors wanted me around in case anything happened.

Nothing happened, but it didn’t take much time for me to get bored. I was relatively new to the Internet at that time and there was an Internet café of sorts right in town, so I would go there a lot and play around. I recalled having seen a website called www.billyjack.com and thought I would check it out, seeing as how I had been a fan of those movies way back when.

There was a chat room on the site and even though I was kind of a rookie with the computer, I had a pretty good idea what that would be and I clicked into it, and there was a couple of people chatting who welcomed me. They were serious about their fandom of Billy Jack and the philosophies and all, but they would also talk about other stuff and anything that would come up, really.

There were more people there at night and I got to know many of them and it was great fun. One night each month Tom Laughlin himself would join in and you could get on the list to talk with him a bit.  Tom Laughlin, by the way, is the guy who made those films. He produced them and wrote them and acted in them and directed them. So it was a big deal when he came into the room, believe me.

I signed up one night because I wanted to ask him about a scene in Billy Jack, which, technically, is the second film in the series, the first one being The Born Losers.

Anyway, I asked him about the scene in the ice cream shop and if there were two dummies, mannequins, placed at a table to represent people.  He said no, but I don’t believe him, maybe he forgot. “Watch that scene and you’ll see what I mean.”

There was a big gathering of chat room people in Los Angeles one weekend and I flew out there to meet some of them. We had one big room reserved for us to hang out in and we sat and talked and drank lots and lots of beer. I’d never been in California before and was fun to be in a place you have heard about but have never seen.

The second day was the big one. That was when Tom himself would be there, accompanied by his wife Delores Taylor, who played Jean in the movies.

We all settled into the big room and everyone expected to hear a lot of stories from him, but he was actually more interested in hearing about us. So we went one by one and told our stories and when my turn came I talked about how I came to discover the website and all because of this acromegaly illness. While I was talking one guy interrupted me and Delores said, “wait, I want to hear more about Mike.”

That was a proud moment for me.

She asked about the acro thing and I told her what I knew, which wasn’t much at that time. Tom said, “But the tumor is benign, right?”    I told him it was and he said, “thank God.”  And that was another proud moment for me.

It was neat to sit there and talk with the guy who made those movies, silly though that may seem. I don’t know what exactly he thought of us, but he did say he did not completely understand the chat room thing or how it worked. When he is in there a woman named Robin does the typing as she relates the questions to him and he answers.

A few months later I was back in the hospital for my second surgery of the transsphenoidal variety and as it happens that was a night where Tom was due to be in the chat room, which I did not know at the time. Later on somebody showed me a transcript of the beginning of the chat and a friend of mine was the first to address him and she told him that I could not be there because I was in surgery but I say hello. He immediately responded, “Our Mike?  From Chicago?”

Do I need to say it? Proudest moment yet. He remembered me after all that time.

 

And now, of all things, there is a similar chat room, more of a support group of Acromegaly patients, with many lovely people who are there when you need them and even when you just want to say hello.

The Billy Jack room was fun. The Acromegaly room makes my life.

 

 

Reasons You or Someone You Know May Want to Consider Having Acromegaly

on Monday, February 20, 2012. Posted in Blog

By Mike Cookman

[Editors Note: This article is designed to be a of more humorous perspective on life with Acromegaly.] 

Being a brain tumor and all you might think that living with a chronic illness such as Acromegaly would be the last thing you want. But having had this thing inside me for so long,  I can honestly say I have found some positive aspects and I would like to share them, for better or worse.

For one thing, you can be referred to as “interesting looking.”  I was told this once by a woman I used to work with, in the D.C. branch of the bookstore that used to employ me, the first I had dated from said store, first of two, that is. The way she said it was like this: “I think interesting looking is part of the attraction.”

So, knowing that acromegaly alters your facial features, I can safely attribute this interesting look to this illness, would this have been said of me otherwise? I’ve heard it said the actor James Brolin was interesting looking so I will consider myself in good company, although he does not have acromegaly, poor guy.

Also, if you’re an acromeg, you will always have something to talk about. You’re out at lunch with a bunch of boring co-workers from the office and there is a lull in the conversation, and you can always fill it in with, “by the way, did I mention I have a brain tumor?”

Suddenly you’re the center of attention. Everyone is asking you all sorts of questions and there is plenty to say. And you can rest assured your name will come up all over the office for the rest of the day and you may meet just meet that special someone.

Side note: don’t bring it up on a date. Save it for the next morning, over even the next.

And, speaking of work, you ever feel like going home early or not going in at all? Acromegaly is there for you.

“Hey Joe,” you say over the phone, “I can’t make it in today.”

“Why the hell not,” the boss asks. “Don’t you know we have lots of meetings today?”

“Well, it’s a brain tumor thing.”

“Oh, okay, uh, see ya.”

It’s as simple as that.

 

If you’re into magic or any other sleight of hand trade, you’re in luck, because acromegaly causes your hands to get bigger, easier to hide things. Let’s say you are a card cheat and you wish to hold out some cards. Those large hands will really come in, eh, handy. And if someone gets angry and accuses you of cheating you just bust him in the head.

Seriously, though, you get to meet a lot of nice people. Acromegalics are the nicest people in this or any other world. We all share our experiences with each other and lend support to someone who is feeling down, which is not uncommon with an illness like this. So don’t mess with an acromegalic or you might just find yourself with a busted head.

 

Patient Care as a Collaborative Process: Employing Nontraditional Experts Offers Sympathetic Perspectives on Patient Support

on Thursday, February 16, 2012. Posted in Blog

All the world's a stage,

And all the men and women merely players

-William Shakespeare

 

 

Originally published in Global Forum, February, 2012 (Vol. 4, Issue 1).  Reprinted with permission from Drug Information Association.  For more information, please go to www.diahome.org

 

Wayne Brown

            Choosing to work in the medical industry today, now more than ever, requires knowledge of multiple disciplines. You probably went into your chosen profession because you had an aptitude for science and a desire to help others; but today, with ever-increasing government regulations, and the omnipresent fear of litigation, the industry of medicine has been forever altered.  The good news is that there is assistance out there, if you are willing to accept the help. 

While a patient advocate can be a parent, friend, or loved one, there is a growing population of professional patient advocates, and our role is starting to be recognized throughout the medical society as a viable option for patients in need of support from others who have a true inside understanding of the physical and emotional aspects of a medical condition.

Realistically, there are too many aspects of the medical field to rationally expect anyone to service all facets. If practitioners could focus more on their strengths without feeling compelled to do everything, everyone would benefit.  One of the easiest ways to offer real and compassionate support for your patients, especially those diagnosed with a rare disease, is to introduce them to a professional patient advocate. The best part: You won’t be violating any privilege by simply handing them a phone number or website and letting them make the choice for themselves.

While I am a patient advocate today, this was more of an arrival point than a destination; but as life kept forcing me down the medical path, I grew well-acquainted with the view from the extra chair in the exam room.  As a teen, I watched my mom struggle for years, waiting to finally be diagnosed with Sarcoidosis because at the time, she didn’t seem to fit the profile.  In my 20’s, I was the primary caretaker for my father as he battled brain cancer that had mutated into eight distinct cancers. Then in my 30’s, I was diagnosed with Acromegaly. Each experience provided its own type of confusion and frustration, while simultaneously increasing my drive and passion for a quality life both inside and outside the medical campus. 

As an advocate, having founded Acromegaly Community, Inc. (www.AcromegalyCommunity.com), I have a different, but broad view of medicine today.  Our organization started small.  Frankly, it didn’t even start as an organization, but as a collection of patients on Myspace. Dedication and perseverance can make a difference.

In the past seven-plus years, I have had the opportunity to work with a number of different people in the industry of medicine: Medical professionals in private practice and in university-based facilities, pharmaceutical reps and executives, health insurance experts, and lots of wonderful patients and their loved ones just trying to cope with life from across the globe. 

One observation that seems to be hiding in plain sight is that there are three distinct factions of medicine that have developed and, generally speaking, there seems to be a lack of trust, which inhibits more cooperative work and long-term patient support between medical professionals, the pharmaceutical industry, and patients. The biggest divide is between patients and their practitioners.  It is astounding how much time is spent as an advocate trying to get patients to be more trusting of the medical community.

            When I started out in 2004, my sole motivation in creating that Myspace group was to find other Acromegaly patients to talk with.  While medical professionals have textbooks, rare diseases are not always textbook-friendly – new information is being uncovered almost daily and patients often believe that their personal stories seem to be of no great interest to their practitioners.  The truth is that realities are what they are, and medical professionals have to accomplish so much in a day that it is difficult to budget hundreds of patient stories into an already overly filled day.  More than that, what can a practitioner do for a patient who complains about loneliness as a symptom when privacy laws for medical professionals are quite clear?         

            The three medical, pharmaceutical, and patient camps could work far better for everyone’s benefit if the relationship was symbiotic, rather than antagonistic, by using the Patient Advocate as your bridge.  Not every condition has a patient advocacy group, but a little research can help you find options. RareDiseases.org currently lists 165 advocacy groups, and adds new groups all the time. 

 

The advantages of working with patient advocacy groups are multifold:

1.    We are singularly focused.  In medicine and pharmaceuticals, you may deal with dozens or even hundreds of issues per day.  Patient advocates have their niche, and that is their focus.

2.    Patient Advocates are not bound by strict confidentiality laws.  While a good advocacy group is rigidly respectful of privacy, we can more easily facilitate introductions between patients. 

a.     A 30-something patient who wants to get pregnant and has questions about what it’s like can learn a lot from other patients.  If they ask for a connection, we can reach out to female patients and facilitate a partnership without compliance fears. 

b.    We have the time to be sounding boards or unifiers for patients and their loved ones, who may be frustrated or confused. 

c.     It’s not just about comparing notes.  While “me too” may never reach the physicians’ desk reference guide, there is a clearly cathartic benefit built in when people join our website, www.AcromegalyCommunity.com.  Many patients and loved ones have learned a tremendous amount simply because the group can pool their knowledge resources. One example: There are limited medications for Acromegaly patients, and the injectable meds can be painful. One patient was prescribed a topical anesthetic to be administered 30 minutes before injection, and that information was shared with the group, to the benefit of many patients. 

d.    Medical professionals who are willing to support and promote advocacy groups generally find that their patients appreciate it, and it can actually save them time because the patient is far more aware of their disease.

3.    Patients who belong to Advocacy Groups are eager to be heard.  Patients and loved ones dealing with the effects of a rare or extremely rare disease generally have very distinct opinions on healthcare, pharmaceutical options, and the state of medicine today, and they want to be heard.  The problem is that most of these patients and loved ones are frequently left screaming into an abandoned forest or preaching to the converted, neither of which furthers patient care or medical research.  Patients know what they are looking for, and the pharmaceutical professionals who are willing to hear them generally find themselves in a direct pipeline of inside knowledge.

 

            What makes a good patient advocacy group?  There are a lot of different advocates in the marketplace, and just as with any field, there are those who are in it for the right reasons, and those who are in it for other reasons.  This is tricky because every organization has to work within its own parameters. 

 

Let this serve as a suggested guideline:

 

1.    Patient privacy is ferociously protected.  As mentioned earlier, unlike medical professionals, advocates do not need licenses to practice, and we don’t answer to the FDA like pharma.  While this frees us in many ways, these freedoms must be used wisely.  Many patients do not want to think about their disease all the time, so the level of activity ranges greatly in our group, which is encouraged.  Our website members are encouraged to share as much or as little as they wish.  If a patient does not wish to share their photos, email, Instant Messaging, and cell phone number, our organization does not have the right to violate that trust.  Any time there is a mentorship opportunity, we always ask before sharing information – even if the patient always says its okay.  You don’t know what that patient’s life is like today.  Respect privacy at all costs.

2.    Support is available to all, regardless of income.  Of course, all organizations have operating expenses.  But patients also have bills to pay.  And if they can’t work due to their medical circumstances, they are probably having insurance issues too.  Why scare patients in need by charging to walk through the door?  Even if the organization is willing to waive fees due to hardship, those in need will simply feel unwelcome and no one at the organization will ever know a need went unmet.  Offering enhanced products and services like journals and tee shirts to help raise revenue makes sense.  Working with businesses that help charities to generate revenue is also logical.  We work with SocialRaise.org to run our website, and they have been extremely generous with their support of the charity and our need to control costs.  We also work with StayClassy.org to help with direct fundraising like walkathons, donated birthdays, and the like.  Fundraising must be creative because membership to our website is always free.  The logic is simple: If we charge a membership fee that will help with expenses, certain members won’t be able to afford support, and if we charge a small enough admission to be affordable to everyone, why bother?  If it keeps one person out, then it’s not worth it.  Tangible support should not be a premium service.  Now, this is obviously easier when corporations offer charitable support, which gets back to the team mentality of patient care.

3.    All experts are welcome, even (or especially) when they compete in the same industry.  Of course, not every business, hospital, or doctors’ office is going to choose to work with advocates, but they need to feel welcome when they are ready.  That said, the professionals cannot have unfettered access to patients and loved ones.  You don’t want your membership feeling as if they are nothing more than lab rats. But when studies are solicited, the pharma and medical camps both feel as if patients are eager to help out; after all, it is to their benefit to help advance science.  And when the medical camp chooses to host an event, they know that the Advocacy Group will cooperate and aid in promoting the event.

 

      The key to building a cohesive patient advocacy TEAM is that all members work as one with one key focus: Patient support.  Help the patient and their loved ones live the best lives they can.  The payoff will be huge for everyone.  The medical community will have patients who are educated consumers and therefore more proactive in their own healthcare. Pharma will more easily build brand loyalty by more easily meeting patient needs and desires. And patients will be less likely to feel totally deserted in the process of managing their own healthcare, which means the whole family network will probably feel less overwhelmed.  Everyone wins.

     As a patient advocate, our organization has always worked to support all other patient advocacy groups, pharma, and medical.  Advocacy is not a competition.  It is very common for us to field questions and concerns from around the world, even from other Acromegaly-focused groups.  Different groups offer different ideas and what may work.  Our organization works with all sorts of different support and advocacy groups, some medical, some not.  We all share ideas and feedback.  All this can do is improve support for the people most in need, so we all can win.

      In June 2012, Acromegaly Community will be hosting our second annual convention in Las Vegas, NV.  The goal of this convention is to bring together patients, medical, and pharma, to provide all attendees with information and support.  We showed in 2011 that informational weekends can be supportive, fun, and educational.  Please consider this your formal invitation to attend in 2012.  If you are so inclined, sponsorship opportunities also still exist.  Our weekends are geared so that patients and loved ones, and medical and pharmaceutical professionals, all walk out more knowledgeable, and more unified as a team.  We would love to have you on our team.

 

 

Wayne Brown is the founder of Acromegaly Community, a group focused on patient advocacy, and was the lead writer for the collaborative book Alone In My Universe: Struggling with an Orphan Disease in an Unsympathetic Universe.  He can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it m

 

Our Past Doesn't Always Cause Our Medical Future

Written by Michael Cookman on Friday, January 20, 2012. Posted in Blog

By Mike Cookman

 

I used to be afraid to tell people I had a brain tumor and I am not really sure why, but I used to think I could soften the blow by saying I had an illness called Acromegaly. But then the inevitable question comes up---“what is it called again?”

“Acro, uh, never mind. It’s a brain tumor.”

When I tell somebody about this there is another thing that comes up and that is---what’s been done about it. So I mention the surgeries and there’s yet another amusing thing that some people do:  they look around your head for scars from the surgery. So now you have to say they go through your nose.

That usually ends it right there.

I was talking with someone recently who I met a year or so ago and who I have not seen but a couple of times since, and this time we actually had a chance to spend some time talking, and she didn’t know about the Acro thing, so I told her.

 

After a couple of hours of talking about it---and me mentioning that this is all in a book---she said something curious: “Yeah, we’ve all done things in our past.”

What she meant was that she thought brain tumors were caused by things we have done, possibly drugs taken or pot smoked, neither of which I have ever done. This seemed to surprise her, as it has others. I don’t know if I should take offense to this or not. It usually goes like this: “YOU’VE never smoked pot???”

Do I really seem that flaky? Never mind, don’t answer that.

She explained that she didn’t actually mean it that way; it’s just that I grew up in the 70’s and she thought everybody smoked stuff then.

Anyway, it’s an interesting notion that something you did in the past may have instigated such an illness. I told doctors I had bashed my head on the side of a swimming pool at a recreation center a couple times when I was a kid but they said that wouldn’t do it. But how do they know? They don’t know what causes it.

I’ve become better at telling people about this over the years. Maybe it’s all the patient testimonials I’ve done, which has lead me to be more at ease with the whole thing. I’ve also let go of the silly notion that it’s my fault that I have a tumor in my brain.

I still have leg pains sometimes, but I don’t like to focus on that kind of thing, it just makes it worse.

Yes, we’ve all done things in the past, but that was then and this is now. I used to be haunted by the past but I can’t honestly say I am anymore.

And with the Acromegaly Community I’ve met many wonderful people with the same illness and that makes me much more comfortable, not that I’m glad so many people have this illness, but since they do, I’m glad they are there.

 

On Martin Luther King’s Birthday: The Civil Rights of the Medical World

on Monday, January 16, 2012. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

While he is most famous for his civil rights work on race, Dr. Martin Luther King, Jr. knew that issues of health were essential for all citizens; because you need your health to protect all of your other rights.

Now I am not a Dr. King scholar, but with his birthday celebration today, I was looking for a deep and meaningful quote of his when I came across one I had never heard before.  In 1966 Dr. King stated that “of all the forms of inequality, injustice in health care is the most shocking and inhumane.”  Nearly half-a-century later, the world is no closer to equality in healthcare.  While the USA gets the most attention for this, we are not alone in the disproportionate availability of quality healthcare for our poorest citizens.  When I was in college, I worked in a small motel across the street from an MRI company, and 20 minutes from the Canadian border.  While MRIs are free up there, sometimes the wait can be daunting.  Other countries with nationalized healthcare will not cover any diseases not recognized as an officially covered disease of their country.  Every system has its benefits and its drawback- that don’t necessarily apply to the moneyed class.

Now while healthcare is still in need of major overhaul, there is something more reasonable you and I can do to neaten our little corner of the world, even if we cant fix everything.  Remember, Dr. King understood that some changes need to be incremental.

In the past several years, there has been a tremendous insurgence in the number of patient advocacy groups.  These are groups, most often founded by patients or their immediate loved ones; most frequently created out of necessity because they have been touched by a medical diagnosis, and when they went looking for support, none was to be found; so they went out and created it.  As Dr. King also said, “change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom.”  If you are dealing with medical issues, every other issue in your life feels magnified.  Trying to go it alone can be a near impossibility.

Of course, support groups are not for everybody.  Some people have a medical condition, and they don’t want to talk about it with anyone- not friends or family, heck, not even their medical professionals.  But there are a lot of people who do like having support, and mutual understanding.  This is especially important for patients dealing with rare or orphan diseases.  In the United States, an orphan disease is one that is diagnosed in 200,000 or fewer patients.  According to the National Institute of Health, there are currently about 7,000 rare diseases in the United States.  Several do have support groups, but many do not.

If you are a patient or loved one struggling with a rare disease, talk with your doctor.  Tell him or her that you need support.  Medication is important, but never underestimate the medicinal value of “me too.”  If your doctor is unable or unwilling to help you, there are ways to find a group for yourself:

Supporting patients and loved ones with rare diseases is not complicated.  Listen and respond appropriately.  Most patients are looking for a sympathetic ear, not a know-it-all.  If there are enough people in your area, set a date to meet.  That can be a lot of fun, and far more cathartic than you even realize today.  But if you are all spread out, don’t get discouraged; just use the online world to meet.

I created a patient support and advocacy group about eight years ago for a rare disease known as Acromegaly, and today we have members around the world!  While it is difficult to host local events, we have great online support, phone conferences on a regular basis, and even a huge international weekend once a year- just to name a few things we do.  Our next steps will bring us far closer to each other- in a virtual way, even if it can’t be in a physical way.

If you are struggling with your medical universe, you are not alone.  Remember, as Dr. King said, change comes through continuous struggle.  If you can assemble a group of like-minded people, the struggle may not get easier, but at least you will have company to help carry the load.

 

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

 

Defending the Rights of ALL Patients, Living and Dead

on Tuesday, December 27, 2011. Posted in Blog

Wayne N. Brown

 

Death.  The ultimate unknown.  People fear it because we literally have no idea what awaits us.  For this reason, it is the ultimate honor of trust when a person asks someone to execute their final wishes.  In the 1780’s, while the people of France and the future United States fought for their individual rights, one man in London got double-crossed by the people he trusted to enforce his wishes into death; and just recently, in 2011, got those same wishes betrayed again, in the name of science--- again.

Charles Byrne, more famously known as the “Irish Giant,” paid his bills by essentially selling his privacy to work for Cox Museum as a sort of local “freak” at 7 foot 7 inches.  His height was even more intriguing back then than it is today.  With a median height at the time of about 66 inches tall (Health and welfare during industrialization, Richard Hall Steckel, Roderick Floud), Byrne was more than two feet taller than his contemporaries, a dubious honor and stressful life for a man who only lived a short 22 years.  The notion of the stress he lived with is reinforced by anecdotal evidence of this man devouring himself in alcohol towards the end of his short life.  Byrne carved out a financial living for himself, with no regard to what effect it would have on his emotional life; so after he died he wanted to be buried at sea; a simple and very reasonable request that would be totally ignored by the people he most trusted.  Local surgeon John Hunter bribed a member of the funeral party to remove Byrne’s body so he may study it.  From the moment Byrne passed on, Byrne’s body, and now skeleton, have been treated as an enviable possession for people interested in the study of pituitary and growth disorders.  Now, 228 years later, the Royal College of Surgeons in London still refuses to let Mr. Byrne rest in peace after turning down yet another request for his watery burial, as recently as this past week.

Speaking as an Acromegaly patient and also as a patient advocate for people coping with Acromegaly, I am conflicted- because I would love to think that there is a cure to this disease hiding in Byrne’s bones, but after two centuries, I believe that this hope has likely faded.  Acromegaly, a disease that causes an overproduction of growth hormone can cause all sorts of life-altering symptoms including: changes in the face and body structure, severe arthritis, headaches, severe joint pain, and severe heart conditions, just to name a few symptoms.  If there were a chance to still discover a cure from studying Byrne’s DNA, it seems likely that science would already be on the right track, and if they are really that close, why not simply give a promise to bury the bones by ___ date?  As another option, it seems that they could simply extract a sample of remaining DNA for further study.  The overarching question is, does the college really need the bones to be studied in new and different ways that have done in two-and-a-quarter centuries, or is the college finding benefit in “letting” Charles Byrne continue to work as part of some involuntary ‘freak show?’

How is it that the man died so many years ago and his wishes are still being blatantly ignored- or does willful ignorance become easier as time passes, now that Byrne has no voice, and his family seems to have all passed on, are unaware, or disinterested in the welfare of their long-gone relation.

If you are looking for Acromegaly patients to fill Byrne’s stead, we have them all around the world begging to get medical attention, and they are alive.  There are many who can’t afford medical care, and would happily take your attention- as long as your respect comes right along with it.  Patients and their loved ones can answer your questions, and even give you responses, something you may find difficult in a man born while the Seven Years War was still being fought.  Now, there are a lot of wonderful doctors and research facilities working tirelessly on the cure and treatment for people enduring this terrible condition, and it is time to let Charles Byrne have his wishes granted.  He did not wish to spend eternity as an exhibit in a museum, being photographed and ogled by student doctors, interns, and tourists.  There are plenty of patients who donate their bodies to research and study after they pass- I would encourage you to study those patients and let Charles Byrne step down from the stage.

Death should be the ultimate escape.  From pain, from embarrassment, and from ridicule.  The offense here is merely heightened by the fact that it is a hospital and an institution of higher learning guilty of this gross offense against a man unable to protect himself.  After all, the Hippocratic Oath says to first do no harm.  It seems that this requirement should follow, even into a person’s death.

 

Wayne Brown is the founder of Acromegaly Community; a group focused on patient advocacy, and was the lead writer for the collaborative book Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.  He can be reached at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Rare is different: rare disease patients and caregivers want pharma to participate

on Wednesday, December 07, 2011. Posted in Blog

To read the original article (and see the embedded video that did not import here), please click here to go to the PharmaPhorum.

Rare is different: rare disease patients and caregivers want pharma to participate

Posted 7th December 2011 in Articles, General | Register to comment

Image

Wendy White

Siren Interactive

(Continued from “Rare is different: patients and caregivers are undisputed “power users” of social media”)

The constraints of time and training limit most physicians’ abilities to effectively diagnose and treat rare disorders. This leads to many rare disease patients and caregivers becoming unusually empowered. Out of desperation they take control of their own and their offspring’s care. Empowered patients can and often do play a lead role in educating physicians on various aspects of rare diseases. They look for the latest information about research, clinical trials and treatment options. They don’t want to wait. They welcome pharma’s participation as long as pharma is adding value by providing the information, tools and support that rare disease patients and caregivers can’t get anywhere else.

In this blog post, the fifth in a six-part “Rare is different” series, we’ll hear from a rare disease caregiver and a rare disease patient, each of whom founded and leads a patient advocacy organization, and has developed effective partnerships with pharma. They’ll share their perspectives on building a trusted relationship with pharma based on each party providing the other with access to information and opportunities that address their needs.

 

“Empowered patients can and often do play a lead role in educating physicians on various aspects of rare diseases.”


Rare disease patients need pharma

Christine Brown is the parent of three boys, two of whom have phenylketonuria (PKU). She’s also the executive director of the National PKU Alliance. PKU is a rare, inherited, metabolic disorder diagnosed at birth through newborn screening. People with PKU can’t metabolize the amino acid phenylalanine, which is found in all protein foods. The current treatment for the disorder is a combination of medical foods and foods that are modified to be low in protein, as well as one prescription medication.

Pharma companies really have the same goal as the patient community; and that is to find better treatment options as well as to find cures for these diseases,” said Christine. “I’ve found that pharmaceutical companies in the rare disease space can be very vital partners for nonprofit organizations working with patients and their families. Those partnerships are very important since it’s the only way we’re going to find cures for PKU, or better treatment options for PKU or other rare diseases. With those partnerships in place, we can work together and improve the lives of people living with rare diseases. I think it’s a real win-win.

Figure 1: Christine Brown with her husband and sons

When you look at the history of effective rare disease therapies in this country, it’s been the result of parents, family members and others who have come together and really driven the research into these diseases that led to treatment options, which led to cures,” Christine continued. “By leveraging the expertise of some of the larger national organizations you can help to create a connection for patient families and caregivers to various pharmaceutical companies, as well as within the National Institutes of Health and the FDA and others. It’s really a very unique community. It’s a very personal and close-knit community.

 

“When you look at the history of effective rare disease therapies in this country, it’s been the result of parents, family members and others who have come together and really driven the research into these diseases…”


The first prescription drug to treat PKU came on the market in 2008,” explained Christine. “Although it’s not a cure, it allows some people to increase the natural proteins that they can take each day. It’s estimated that 80% of adults don’t adhere to their dietary therapy and therefore have higher phenylalanine levels than what is recommended. So now some are able to take this pharmaceutical drug that lowers their blood phenylalanine levels. It’s been wonderful to have the first drug approved for the treatment of PKU. It’s another tool in the toolbox that may be helpful for both adults and for families that have children with PKU.

Christine Brown has developed a very effective partnership with pharma. Listen to her advice for rare disease patients and caregivers and hear what else is needed for pharma to participate more fully by clicking on the “play” button below.

 


Pharma needs rare disease patients

In addition to being a rare disease patient and advocate for people with acromegaly, Wayne Brown is the founder of Acromegaly Community and author of Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World. Acromegaly is a chronic rare disease characterized by enlargement of the bones of the head, the soft parts of the feet and hands, and sometimes other structures, due to excessive secretion of growth hormone by the pituitary gland.

Figure 2: Wayne Brown

Pharma reached out to me long before I was officially any sort of patient advocate,” recalled Wayne. “My organization began as a MySpace and Facebook group. I was just looking for people like me to talk to because I was struggling with the disease and its rarity. In 2008, a PR representative from one of the pharmaceutical companies contacted me about creating a patient advisory board.

Because of the relationship Wayne has built with pharma, there’s an open exchange of communication when he and other acromegaly patients attend pharma events. Likewise, pharma’s presence at patient events helps pharma to better understand the patients and the disease from the patient perspective.

 

“We need to have a relationship between rare disease patients and pharma that’s beneficial to all of us…”


I love when pharma looks for feedback from their patients and from potential patients,” explained Wayne. “Because once you actually sit across the table from another person, then and only then can you truly understand how the disease affects him or her in a three-dimensional way, and how it affects spouses and, in some cases, how it affects their children.

Words of wisdom from Wayne

• “I think the greatest tool pharma can have is greater knowledge of the patient outside of what’s written on the printed page; to really talk to and communicate with patients.

• “We need to have a relationship between rare disease patients and pharma that’s beneficial to all of us. It’s like with any relationship. As soon as it’s too one-sided, then someone’s being hurt and there’s no point in maintaining the relationship.

• “I think part of the role of an advocate is making sure you’re getting pharma what they need. They need to sell their drug, and that’s a good thing because the more they sell their drug, the more they’re going to be able to help us. If I’m a patient advocate saying, ‘I need you to do this, this, and this, but I’m not going to help you sell your medication, I’m not going to do anything to inform the patient that this drug is available,’ there’s no reason for pharma to work with us.

- Wayne Brown

Learn more about the partnership that’s been formed between Wayne Brown and pharma by clicking on the “play” button below.

 


Building a rare partnership

Pharma can participate and provide value to rare disease patients, caregivers and online communities by:

• Listening to what patients need

• Providing patient-friendly information that’s pertinent to the needs of patients and caregivers

• Supporting online resources and communities for patients and caregivers

• Sponsoring research for new therapies

• Working for approval of new therapies

• Supporting patient advocate group initiatives

Rare disease patients and caregivers are a gold mine of information and welcome opportunities to partner with pharma in building awareness of rare diseases and working toward the discovery of new treatments and cures. Pharma needs to open up the dialogue with them and respond with timely, relevant information.

Part 6, the final post of this series—“Rare is different: innovation happens at the margins”—will be published on 5th January.

About the Author

Wendy White founded Siren Interactive in 1999. Under her direction, the agency has grown into the market leader for niche pharmaceutical relationship marketing, focused on providing value to patients, caregivers and healthcare professionals through relevant online content about therapies that treat chronic, rare disorders.

Wendy’s daughter, Casey, suffers from a rare genetic disorder, nail-patella syndrome. Wendy’s personal tribulations surrounding Casey’s disorder have influenced her to become a true advocate for her daughter and other children with rare diseases and disorders. Over the years she has expanded her relationship with other mothers and caregivers of children with rare disorders, as well as foundations, the medical community and the National Organization for Rare Disorders (NORD). Furthermore, she refocused Siren Interactive into a full-service relationship marketing agency for rare disorder therapies.

Recently, Wendy led the collaboration of 12 fellow rare disease caregivers to coauthor Uncommon Challenges; Shared Journeys: Stories of Love, Hope and Community by Rare Disease Caregivers. Wendy serves on the global board of the Healthcare Businesswomen’s Association (HBA) and is a board member of the National Organization for Rare Disorders (NORD), a Trustee of the Boys and Girls Club of the Union League Club of Chicago, and an Elder in the Presbyterian Church. She holds a Bachelor of Science in Quantitative Methods from the Indiana University College of Business.

For more information, email Wendy at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , or visit http://sireninteractive.com/.

How can we build a relationship between rare disease patients and pharma that’s beneficial to everyone?

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