Monday, January 18, 2010

Acromegaly, Schmacromegaly!

Happy New Year everyone!

I hope that 2010 is the best year ever for our health. I have some really big goals for this year, and I truly believe that if we work together we will accomplish them:

1) Raise awareness about acromegaly
2) Find the cause of acromegaly
3) Find the cure for acromegaly

My dream is that one day acromegaly will be completely eradicated. Seem impossible? IT IS POSSIBLE! Look a the way that learning about human nutritional needs eradicated scurvy. We just need a better understanding of this disease. WE CAN DO IT! IF WE DON'T DO IT, NO ONE ELSE WILL. No one is more invested in finding the cause of and the cure for acromegaly than us, the people who are living with it either personally or through a loved one.

So let's pull in all our energy, contacts, and resources to work together to make this happen! Ideas:

1) Raise Awareness (and promote early diagnosis):
  • Continue to support the work of people creating awareness on the internet, like Wayne at Wayne, you are an inspiration!
  • Look for more news opportunities, like Almu's newspaper feature or Tanya Angus on the Today Show, and spread the word. I admire Almu and Tanya for speaking out publicly about such a personal issue.
  • Reach out to celebrities with acromegaly (Tony Robbins, perhaps? Professional wrestlers?) and encourage them to be spokespeople for the disease. Maybe the loved ones of celebrities who have passed away due to acromegaly would want to help as well.
  • Get acromegaly written into an episode of House MD (TV medical drama that focuses on diagnosis of rare diseases) or some other mainstream entertainment vehicle.
  • Create a flyer or business card with information about diagnosing acromegaly to people who might be in a good position to identify potential cases of acromegaly
2) Find the Cause (so future cases can be prevented):
  • Work together to find commonalities between us - we're rare so we need to connect the dots
  • Learn as much as possible about our disease and gain understanding of what's going on in our bodies
  • Promote research
  • Participate in research opportunities
3) Find the Cure (to be free from treatments):
  • Early diagnosis increases the likelihood of a successful and complete tumor resection, so this ties back in with raising awareness
  • Emphasize to our doctors that we are interested in a cure, not just treatment
  • Participate in clinical trials
  • Learn how how the health care industry works so that we can encourage them to help us
  • Do research and make connections. No one knows this disease better than we do - others have taken matters into their own hands, so can we!
(I haven't seen this yet but the trailer alone is inspiring)

(Lorenzo's Oil- I haven't watched the whole thing but the synopsis sounds like what I hope to accomplish with acromegaly)

This post is just to start the ideas flowing - come up with more and let me know what you're thinking about in the comments!

Side note- I am inspired by the work of Fran Drescher's work in the cancer community (Cancer Schmancer).


Alecia E. said...

Nice post, Ellen. I agree.

By giving ideas on how to get involved you've helped take the first steps in getting things organized. I've noticed there's so much more on the Net about acromegaly than when I was diagnosed 4 1/2 years ago. It's encouraging to see acromegalic patients out there sharing their story and raising awareness. Being connected to people in the acromegaly community helps deal with struggles as they come up. I think we've all started in the right place by interacting with each other.

Thanks for posting the trailer to Extraordinary Measures...I hadn't heard of it. Looks like a good movie to watch.

Starbucks Addict said...

On the finding causes front, I'm wondering if any of you may have been exposed to pesticides regularly? We moved to our new home in 2001. We had a major ant problem and I started having our home treated for pests regularly. They sprayed outside the home every few months starting in 2001, and a few times a year indoors for the first year or two. I started showing visible signs of the Acromegaly in 2003.

Tina said...

I'm really glad to read your blog. I'm a friend of Tanya Angus and am currently working on a website for her. Being diagnosed early on is SO important.