What is Acromegaly
Community.com?

Monday, October 15, 2012
By, Wayne Brown
Acromegaly is a rare disease that is caused by the over-production of growth hormone by the pituitary gland.  In some people, it can lead to gigantism.  In most people, they can suffer a wide variety of symptoms including enlarged extremities, severe joint pain, thickening of the skin, insulin issues, migraines, vision problems, and severe cardiovascular issues- due to the thickening of the lining of the heart. At one time, most acromegalics could go their entire lives without ever communicating with another soul who understood their struggles.  Certainly, that feeling of isolation was one of the worst parts of my diagnosis.  One night I was sitting alone in the darkness, trapped with my thoughts.  Am I really alone with this?  Are the medication side effects normal?  Why do I still have days when I’m tired?  How do I explain to a date that I have a tumor in my head?  And of course, the ultimate… am I going to die? When I looked for local support, I came up empty; reinforcing my feelings of isolation, so I decided to do the next-best thing and lift the metaphorical window and screamed out to the rest of the world.

 

So where can you scream that the whole world can hear you?  Well the internet of course!  While acromegaly is an ‘orphan’ disease, there are still a number of us orphans out there.  While my quest started slowly with the creation of a group in MySpace, that eventually evolved to a group on Facebook.  A few years later as I became more actively involved in the Acromegaly community, our social networking eventually became a free-standing website called AcromegalyCommunity.com.  The goal of the site is to offer support for all people touched by the disease regardless of education level or experience with the disease.  There is something for everyone, and yet we still keep right on growing.

In 2009 we started working on a collaborative book and it is done!  This is a book written by our members, explaining life with a rare disease primarily through the patient’s eyes.  What was life before diagnosis, how did we manage diagnosis and treatment, and how are we managing our live now?  The book is informative, entertaining, and emotionally touching.  We have gotten the highest praise from the medical community, and from total laymen, so we hope that you will enjoy it too!  Expect to see it in early May of 2011.

Now Acromegaly Community is offering really tangible support.

We are now offering conference calls where anyone can call in twice a month for support.  Every conference call has a theme where the leader will discuss the specific subject matter before calling on callers for their questions and comments.  While we cannot meet in person, this offers a real-time virtual support meeting.

And come May 6-8, 2011, we will actually be having our first ever support group get-together:  It’s About the Community!.  We will be congregating in Las Vegas, NV with medical experts from around the country to offer knowledge and support.  Meanwhile, members can get to know each other, bond, and rejoice as the sadness of solitude can melt away even a little.

We are also currently working on assembling our very own newsletter that will be available both online and offline.

Acromegaly can be a very lonely illness, but we are working to overcome that loneliness every day.  With us, you can choose not to be alone.    Our friends span at least five different continents, and dozens of different countries.  And what really makes everyone so great is that, despite our individual backgrounds and experiences, we all have the same goal of helping others- no matter where they are on their path.

So I would like to welcome you to our community.  Everyone is welcome, and your feedback is appreciated

 

Wayne Brown

Founder of AcromegalyCommunity.com

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