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
Founder of AcromegalyCommunity.com