Tuesday, June 23, 2009

Bob and Tanya

I do not know how long this link will be active. It is from MSNBC, prime news coverage on the story of Tanya Angus who has been hit VERY hard by acromegaly. She appears here on the Today Show with her story (includes video) accompanied by Bob Knutzen. Bob is the guy that has been helping me with my case with the VA. A very hard-charging guy with many contacts with doctors, specialists, and the military. Anyway, here is the link:


Update: Another article about Tanya here:

Saturday, June 6, 2009

Seeking post-surgery options

Hello! Just wanted to give a quick update. My IGF-1 has been rising steadily overt the last 2 years post-surgery. Last month, it's risen to my record high of 516. Ironically, it was normal (214 ng/ml) a day before the surgery.

I am scheduled to consult with Dr. Peter Eng, an endocrinologist, who practices in Mount Elizabeth Medical Centre in Singapore. I have very limited options here in Manila in terms of medication, hence, the reason why I'm seeking treatment abroad.

Comments/suggestions are most welcome! I'm flying to Singapore tomorrow to have my bloodwork repeated, and undergo my follow-up MRI there.

I just have one objective--to arrest my IGF-1, and hopefully get that elusive cure, if not, then at least the right management for my case.

Tuesday, June 2, 2009

Patients like me?

Hi Folks!

"Do you have a life-changing condition? Learn from the real-world expereinces of other patients like you."

That's the pitch from patientslikeme.com, a website that lets you answer questions to create a health profile, then find others whith similar conditions to compare treatments, progress, etc.  Kind of like what we are already doing here, except much more organized!  Patientslikeme.com was created as a response to ALS, but it now covers several more "Disease Communities," including some rare diseases.  However, I don't see acromegaly on there, and I want to!  I have been thinking of adding some kind of acromegaly meme-style profile questionnaire so we give a quick picture of where we are at with our disease and treatment.  It would also be a great way for new people to introduce themselves.  Maybe I'll work on that....

In the mean time, I encourage all of you to click on this link to REQUEST A COMMUNITY.  According to them, they have a really good no-spam policy, and all they ask is your email address and the what you're interested in (acromegaly, duh!).