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.

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.

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

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.

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:

• http://www.rarediseases.org/advocacy/alliances
• http://www.dailystrength.org/
• or just look up patient support “your disease” and look at what’s there.  If nothing good comes up, and you are up for it, start one.

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

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

Five years ago, former Joliet resident Sherry Colstock noticed her jaw was growing.

Three times she asked her doctor about it and three times he told her he didn’t notice a difference. Finally, she researched her symptoms online and asked her doctor to measure her growth hormone. Colstock, now of Arizona, learned on her 37th birthday she had acromegaly.

She now is working tirelessly to make others aware of this rare, but serious disease and to help raise money so sufferers may attend Acromegaly Community’s 2012 Conference in Nevada.

“There are people who have it that are undiagnosed or who are diagnosed too late,” said Colstock, a single mother and former caregiver. “People will see their feet growing or their ring sizes changing and think they are getting old and gaining weight. They don’t realize you’re not supposed to grow anymore after puberty.”

According to the Mayo Clinic, acromegaly is a serious rare disorder caused by increased hormone production from the pituitary gland. A benign pituitary gland tumor is often, but not always, responsible for the increase.

Acromegaly most often occurs in middle age. When it begins in childhood, it is known as gigantism because it can lead to excessive height and bone growth. Some individuals with acromegaly may experience a deepening of the voice and hypertension, but fortunately, those are two symptoms Colstock does not have.

“My jaw’s wider and I’ve taken on more manly features,” Colstock said. “When I go out, eventually someone refers to me as a man. I’ll be standing next to my child and someone will say, ‘Go ask your dad.’ In the past, people used to call us monsters.”

Although Colstock’s symptoms vary due to fluctuating hormone levels, which she keeps in check with injections of lanreotide, they include hyperhidrosis (excess sweating), type 2 diabetes, sleep apnea, joint pain, degenerative disc disease, degenerative bone disease, osteopenia, hyperinsulimia, temporomandibular joint disorder and asthma.

Colstock is losing her vision and hearing; she struggles with recall and concentration. She also battles depression. She avoids mirrors because she no longer recognizes the face that looks back. The worst part of the disease is that it requires her daughters, ages 13 and 15, to be part-time caregivers.

“I want to be normal,” Colstock said. “I used to work two jobs, go on vacation, swim, dance and bowl. The kids and I went to the park and on hikes. I just want my life back.”

That’s why the first acromegaly conference Colstock attended last year was so important to her. Everyone in the room — all 23 of them — fight identical hormonal battles every day.

“Everyone was looking at me and saying they understood and they truly did,” Colstock said. “It was the most comfortable I ever felt in my life.”

To donate toward sending Colstock to Acromegaly Community’s 2012 Conference in Nevada, visit www.stayclassy.org/fundraise?fcid=159298.

Copyright © 2011 — Sun-Times Media, LLC

Television ads and newspaper inserts are already gearing up for a fanatical holiday season as chain stores focus on capturing America’s finite gift budget.  In just a few days, people will be pushing away from their Thanksgiving Day tables, not for football and chatting in the family room, but rather for malls and plazas.  They will leave their loved ones on the day of Thanksgiving to get in line for gifts that will be forgotten, broken, or misplaced even before the winter thaws. Shoppers cry outrage about the stores that will open earlier than midnight of Black Friday, but they do it while getting their kids bundled to stand in line with them, never noticing the irony, much less their culpability in this annual conglomerate cash grab.

What is the purpose of this annual blitz of credit abuse?  Why, to show people we love them, of course.  And we do this by leaving their side on a holiday.  I am noticing an absence of logic here.  Now lets ask ourselves a tough question: does Uncle Joe really want or need another horrible tie just because you don’t know what he wants?  So you end up settling for something that Joe will just have to return in the post-holiday sale blitz.  Now this is not intended to be a Grinch-like rant.  I am just thinking there might be an alternative to the chaos for us adults.  Toys for children make sense; after all, some of my fondest memories are of unwrapping the newest, coolest toy.  But as we get older and shopping becomes more difficult, maybe there is an alternative.  After all, most of us, if we want or need something, we just go get it.  And if it is so expensive that we just cant go out and get it, odds are, no one in the family is going to get it for us either.

Here is an idea to refocus your gift dollars- and take a tax write off in the process.  Rather than struggling to figure out something your loved one may or may not like, why not support your loved one’s favorite charity by making a donation in that person’s name?  This helps an organization your friend already believes in, you get to help people in a meaningful way, and if you really need that extra shove, you can write off your gift on the upcoming year’s income taxes!

The key to making this gift special is that it should be a charity your loved one believes in.  Donating an acre of Brazilian Rainforest in your buddy’s name doesn’t mean much if he is not environmentally active, just as donating money to a pro-gun lobby doesn’t make sense if your loved one is a pacifist.

How do you know what the right charity is?  Well, the easiest way to find out is to ask the person.  Simple enough, right?  Then, just go to the charity’s website and click on the “Donate Here” button.  Most not-for-profit charities make donating a very simple process.

Some charities have even started campaigns where members can initiate the process themselves.  With my charity of choice, all a member has to do is go to www.AcromegalyCommunity.com and click on the “Get Involved” button.  The rest of the process takes seconds.  After set-up, all a member has to do is email their friends and family asking them to donate to that specific cause, rather than going shopping.

Lets remember the reason for the season.  Save your car the miles, avoid the crowded malls, and skip the bloated credit card bills in January; all to help your loved ones help their favorite cause.  Everyone will feel better for it.

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  

Want reasons to be at

It's About the Community! 2012?

Check out some of the photos from 2011!

You can find more on our facebook page by clicking here.  

When you run a fledgling charity, there is a very complicated line we must walk. How do you find the healthy balance of raising money without sounding like you are begging? We all have obligations, and we are appreciative of every single person who dedicates time and energy to our members. Still, if your organization is expected to service the population it serves, simply keeping the lights on is not going to service your members.

So Acromegaly Community has committed to making a good time out of our fundraising events. We might not have a ribbon yet, but we can have a birthday party every year, a birthday party where the partygoers get the gifts!

In 2010 we celebrated the birth of Acromegaly Community, Inc. with Kickin’ off the Pit.  Why that name? Well, Acromegaly is a pituitary tumor that usually grows to be less than 10 millimeters, and for that reason, it is frequently referred to as a pit, like you would find in a piece of fruit- since it is right around the same size. How do they get at this tumor in the skull? For most patients, they will have their near-brain surgery through their nose! How could we not want to party after that kind of fun?!

Well 2011 is here, and its time for Kickin’ The Pit! It’s our first birthday, and everyone is invited to our party!  Saturday October 22, 2011 at Santora’s Pizza, Pub, and Grill on Transit Road near Sheridan Drive in Williamsville, NY! For only $25 per ticket, attendees will receive:

--All You Can Eat Fresh and hot Pizza and Wings

--Unlimited beer, wine, and soda (certain beer and wine not included)

--Opportunity to win prizes

--Live Deejay sounds from Cory Downey

Honestly, this is a great deal if a restaurant was just doing it as a middle-of-the-week promotion.  But here, you are going to be supporting some great people in need, and you don’t even need to be awake for work in the morning. What more could you ask?

But that’s only half of it! See, not everyone can make it to our great party, but EVERYONE CAN JOIN IN THE FUN! This year, Acromegaly Community is holding our second annual auction fundraiser. Simply go to www.BiddingForGood.com/AcroCommunity and see what you can bring home for you and your loved ones. With the holidays around the corner, you can give some pretty unique gifts this holiday season, or just keep them for yourself.

Our auction will run until November 20, 2011, and among the prizes you will find are:

•   exotic vacations and quick getaways

•   sports and coin collectibles

•   beautiful jewelry

•   entertainment

•   Specialty services like Viral Marketing and Life Coaching

•   unique experiences like riding on America's Cup and attending a filming of The Daily Show

So by supporting Acromegaly Community, how will we invest your generosity? Our Board of Directors is 100% volunteer, and our staff is totally volunteer. Proceeds go to Acromegaly Community and will be used to help:

•   organize regional get-togethers for patients and loved ones

•   scholarships to It's About the Community! 2012

•   support services for patients and loved ones throughout the year

•   Information and support for patients and their loved ones

•   Information and support as needed for various members of the medical community- as it relates to Acromegaly

So please spread the word! Bring your friends to the party on Saturday, and let everyone know about the auction online.

Auction donations keep getting added on, so check back.  And if you and your business want to join the auction, we encourage you to contact us at (716) 844-8780.

We look forward to meeting you and having fun while we help good people in need.

I was at a table by the window in Panera one morning and I was looking out at the people going by, most of whom were going to work in various offices or Northwestern students running to class; the office workers with cups of coffee and briefcases or purses and the students with backpacks and ipods.

It was chilly outside but the sun was bright and the sky was blue and cloudless, providing the illusion of a warm summer day if you were near a window, as I was.  I was playing with cards as I people-watched and I glanced at the sidewalk and for some reason I got to thinking about what life was like before being diagnosed with Acromegaly.  The sidewalk was empty because there seemed to be a break in the people rushing from the nearby L train station and I remembered that I used to walk along that very same sidewalk when I first moved here in 1999, when I transferred from D.C with Borders.

In those days it would never occur to me that I would one day be told I had a tumor in my brain, or that I would take medications that I needed in order to stay alive. I could not fathom having a rare, chronic illness that would change me from who I was then to who I am now.

I sat in Panera  and thought about how I used to go to work every day and have fun there and then go out with co-workers and friends to bars or clubs or to someone’s home and do whatever we would do, and many of those places we still go to today. But back then I wasn’t sick. Or maybe I was but I didn’t know it.

A lot of memories came back to me. Like when Sal and I first started meeting up at the Metropolis each night before we even knew each others names. One evening we were seated at a table, she with some kind of tea and me with a cookie. She had been out with co-workers for a couple of drinks before she and I met up. She was really cute after a couple of those, and after I finished my cookie and wiped my mouth with a napkin she said, “I could have licked that off for you.”

That was the beginning of it all right there.

I also remembered how I used to attend a lot of concerts, and how I never do that anymore. I can’t handle bright lights, particularly those pulsating different colors to loud, harsh music. And, sick or not, I just don’t like being around large crowds of screaming drunk people. But it was fun to be with friends, many of whom have moved away and I never see anymore.

Looking out the window I felt like I was in another world. In fact, I almost forgot I was in Panera , but what brought me back to the current day was one of the nice employees tapping me on the shoulder and saying, “Mike, are you okay?”

I looked around and he appeared concerned. I was barely aware that I had tears streaming down my face, but I smiled and said I was fine, thanks. And he went back behind the counter. That’s why I like that place, because the people are so nice there.

The tears were a mixture of sadness and joy. I fondly thought over the old days but I must say I really don’t mind the way things are now. I’ve got an endocrine nurse who keeps me alive, and I’ve got lots of lovely friends in the Acromegaly Community who I would have never known had I not been diagnosed with this odd illness. A tumor in the brain? Well, that’s a small price to pay to have good friends around every day.

The announcement is official!  Acromegaly Community’s 2012 conference will be held June 8-10, 2012 in Las Vegas, NV!  This year we will be attending at the Red Rock Casino, Resort, and Spa.  You can check out the hotel at: http://www.redrocklasvegas.com/

Lock in your spot with the Community by calling 716-844-8780.  If you reserve your space with Acromegaly Community during 2011, you can guarantee the same Weekend registration charged in 2011.  Only $125!

Can't wait to see everyone in 2012!

We are working on putting together a fantastic program that will be interesting and fun.  You definitely want to make sure you are a part of this fantastic opportunity.

Dear Mom, Dad, Brother, Sister, Husband, Wife, Partners, Children, friends and family,

I would like to introduce myself.  I am someone in your life who loves you and cares for you.  I am sorry if you don't feel well a lot of the time.  I am sorry you have to take painful shots in your backside to keep your pituitary tumor in check and a handful of pills every day. I am sorry you have a headache, joint pain, depression, eyesight issues and general malaise.

However I do want to tell you something.  I love you.  No, I don't exactly or specifically know what you are going through.  I don't feel your joints ache, I can't visualize what you see with your diminished vision, and I don't have a headache 24/7.   But I do see you try to make it through the day, plodding along, trying to put up a good front for me.   Sometimes when you don't put up a good front I can see the pain in your face and see how tired you are from not feeling well day after day.

Years ago if anyone had ever said to me 'when you are older you are going to become very knowledgeable about pituitary tumors' I would have denied the possibility. How about diabetes?  Got it, thanks.  How about organ failure, MENS, Crones, blindness, transsphenoidal surgery, gamma knife?  Got it, thanks.

Now, about me….  I go with you hand-in-hand, to as many doctor appointments and conferences as possible.  I am happy to sit in the lobby with you waiting for the doctor to call you back to the room so he can say 'how's it going, any changes, thanks for the co-pay, see you in 6 months.  I sit next to you when you have your MRI because you are claustrophobic and need my calming demeanor to help you through the pounding as the test progresses.  I help with your shots, run to the pharmacy to pick up your meds, ask about your day and offer my love and support.  Please understand and believe me when I say that I am not the enemy. However, since I am the one closest to you when your Growth Hormones get the better of you, I feel like I have to shoulder the blame when you say something you should have kept to yourself.  If you feel crappy, I get it but please don't take it out on me.

I also know that there are some patients who do not have the type of support my Mom, Dad, Brother, Sister, Husband, Wife, Partner, Children, friend or family has, but there isn't much I can do about that, my hands are full.   I have a job, children, a home, a car, friends and I need to keep everything on an even keel if possible, and I am trying my best to keep my sanity, same as you.

My goal here is to remind you that you are not alone.  You have people who care, even if they don't completely understand.  But please be nice.  I know that sometimes it can be hard, but please make an effort not to blame the person who loves you and wants to help you.  Your meds and your tumor make it hard for you to do this sometimes but the rest of us would love it if you would try.

Signed,

Anyone's and Everyone's Loved One

Wayne Brown

AcromegalyCommunity.com

What does it mean to be classy?  Is it simply being stylish, fancy, well-spoken and well dressed?  I don’t think so.  Does it mean that you are making good choices that benefit those around you?  I believe it to be.  Helping others?  Yup.  Putting other people’s needs ahead of your own?  Of course!  I believe that someone who is classy is warm towards others, without being judgmental or mean.  They try to see the world through other people’s eyes and make decisions that will benefits those around them, even if it is not always the most convenient or fun; though the warmth and fulfillment of such classiness cannot be compared.  Welcome to our Community.

I am not trying to be self-aggrandizing of the Acromegaly Community by saying our group is so classy.  All I am doing is reinforcing what we have already been recognized for.  Several months ago, an organization named StayClassy.org was soliciting nominations for organizations that work to help better the people and communities around them.  In the words of the organization, “[t]he CLASSY Awards is the largest philanthropic awards ceremony in the country, recognizing the most outstanding philanthropic achievements by charities, businesses and individuals nationwide.”  As it was written on AOL.com last October, “Hollywood has Oscar, Broadway has Tony, and now philanthropy has the Classy.”  When stories were being requested, Acromegaly Community had five different member-submitted nominations, all of which made it through the initial round, where nominations are accepted or rejected based on public voting.

StayClassy.org is only willing to move one nomination per organization to the final round of judging, and we made it!  The submission was written by one of our first members: Mary Kaiser.  She wrote a wonderful essay all about how Acromegaly Community has helped her with the loneliness of Acromegaly.

Our organization has always amazed me.  We have so many people who are generous with their time, energy, and spirit.  People who are willing to give of themselves to others in need.  Whether it is an encouraging word, a phone call to a new friend, or even traveling across the country because a member knows their friend is in trouble, and they can empathize with the pain.  The stories members tell always amaze me as to how much we all rally around each other, especially when the chips are down.  That is very special

Now we ask you to show the rest of the world how CLASSY we actually are!  Voting on the Classy Awards goes through August 26^th.  There are 25 very worthwhile organizations in our category: Most Innovative Use of Social Media. You can only vote once! So many of you do so much for others in our organization.  This is a chance for our group to get some national recognition!  Plus, if we do win, Acromegaly Community is eligible for up to $150,000 in prizes, money that gets invested right back into the Community.

Please vote at http://www.stayclassy.org/classy-awards/voting.  We also ask that you share this message with all of your friends and family.  Feel free to pass along this blog throughout your email, Facebook, Myspace, LinkedIn, or whatever your social media of choice.  Let them know that this is important to you, and that national recognition for Acromegaly Community will go a long way towards the organization’s ability to support our members in new and exciting ways.

I already know how Classy our Community is, and so do you.  Now lets show the rest of the world how special the Acromegaly Community is!