Wednesday, June 17, 2009

More About Undiagnosed Diseases Program

I'm not sure why I'm getting all excited about this since I've got to clear a huge hurdle to get chosen for the program. And there's no guarantee even if I get accepted that they will be able to diagnose me.

But I just think it's so cool that there's a program like this for all the medical mysteries out there. (And please, President Obama & Congress, don't cut its funding!)

Anyway, I wanted to share a link to a New York Times Magazine article about the program (featuring an Oregonian no less!) that was published back in February. I'm shocked none of my relatives or friends saw it and pointed it out to me back then, but thanks to Shiri for telling me about it in the comments of my last post! (Note, you may need to register with the NYT to view the article on the website, but it's free.)

OTOH, after reading the article, I suspect I'm not nearly sick enough to qualify for the program. But that's OK. I like knowing it's out there, and I'll bring the information about it to my internist next week and see if she thinks I'm worth offering as a candidate to the NIH. (I wonder if my rheumatologist would go on the record as saying that perhaps I've got a previously unknown/undiagnosed disease and that's why they're having trouble figuring out what's wrong with me and how to treat it.)


Shiri said...

Woo hoo! And here I came back because I forgot to click the "send me follow up comments" spot, but find that even better, you read the article! Oh, and right, called me out :).

I know, I totally felt the same hope when I read the article/heard about the program. My god, I really hope this works for you! Can I write a rec to get you in, too?

Oh, in case you need some reading to do, I wrote a blog post for my work's staff blog. I think because I've gotten attached to your world, I want to show you something of mine.

SharonMV said...

Dear Aviva,
It's worth a try, if your doctor is willing to do it. I'm thinking maybe also the length of time you've been ill is a factor. I know of a person through the PID (primary immune deficiency) board I'm part of who actually did get accepted & was evaluated. She apparently has an immune deficiency, but it hasn't ever been completely dxed. I don't think they dxed her, but she wrote that it was a good experience. Don't know much more than that. She is young, but probably has been ill since childhood, not completely disabled as I think she's in college. She is probably on IVIG & other meds which help.

By the way, did you read my comment from a week or so back? Just wanted to know if Adult Onset Still's disease may be worth looking into for you. If it is, your rheum probably has already considered it. I don't know all your symptoms, so just mentioned it on the chance it might apply.


Aviva said...

Shiri: I always try to give credit when it's due, and I really appreciated you telling me about the article since it hadn't come up when I'd googled the program! And that's a lovely piece of writing you did, and a Very Cool project you were/are working on!

Aviva said...


Sorry about the delay in response! I did see your comment last week, but it's been a hectic month for me with various procedures and then my parents visiting for a week.

I don't think I'd be a good candidate for Still's because although I run low-grade fevers quite often, I have only spiked high fevers once or twice since I got sick. Some of the symptoms for it are definitely stuff I deal with, but I don't have the really high fevers that seem to be the hallmark along with the rash.

Thanks for the suggestion though!!!! I greatly appreciate all attempts to help me and my doctors figure out what's wrong with me. And I'm happy to know you're still around; I've missed you. :-)