Friday, July 17, 2009

Are you alone? No!

So you have been diagnosed with Acromegaly. If you are anything like I was, a small amount of congratulations is deserved. I know that I was complaining for almost ten years about how lousy I felt, and finally being diagnosed offered a certain modicum of relief. However, if you were more like me your next question was, what the hell is that?!

Welcome to one of the largest tiny groups in the world. There are no stickers, no fundraiser cut outs of scrap paper sold at fast food restaurants, no ribbons, and most critically no personal support groups to help you after diagnosis. Most acromegalics could go their entire lives without ever bumping into another soul who can empathize with what you are feeling. That was the worst part for me. 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 was diagnosed, I had a number of family members dealing with ‘high profile’ diseases, so I felt guilty if I ever complained that I felt horribly. So what is a person to do? Well I decided to look for support. I started by going to a support group for people with brain tumors. While everyone was very nice, it was very clear that this was not a good fit since everyone else had cancer. When I looked for groups that helped people with just ‘average’ tumors, I found none. So I decided to do the next-best thing and lift the metaphorical window to scream out at the rest of the world. “Hey, is there anybody out there?” While it took a while for anyone to answer back, it did happen. And now I am proud to have friends around the world.

And 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 all over the world. 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, I eventually made the full commitment of patient advocacy and created a free-standing website called When I created this website, it was my dream that this website should offer support for all people touched by the disease regardless of education level or experience with the disease. There is something for everyone.

Acromegaly can be a very lonely illness. I know this beyond a shadow of a doubt. But the thing about loneliness is that you can minimize that feeling if you can introduce yourself to people who are experiencing similar issues. While it would be nice to feel the warm embrace of another acromegalic, you may be the only one in your town. Then again, you might not. But the odds of actually meeting someone else is probably small.

The bottom line is that you are not alone if you choose not to be. I love our gang. I know for certain that our friends span at least three different continents, and dozens of different countries. But what really makes everyone so great is that we all come from our own backgrounds and experiences, but we all have that one same horrible thing in common.

So I would like to welcome you to our community. Everyone is welcome. I would love to hear your feedback. What do you like? What would you like to know?

Join us at and be with people like you.


Starbucks Addict said...

It's always great to see another acromegaly support group :-)

Unknown said...

I am so scared. My husband left me three years ago. I have a very high profile job. No family other two children who see me as invincible. They need me to be strong. I have been ill for 8 years and they have said it was fibromyalgia. I asked if it was a pituitary tumor then. I am a medical professional. That doesn't help me now. They have just found my elevated IGF-1 levels and I am alone and must maintain functioning. I live with pain every day.