Di Has Stories…

(and they’re all true)

Other Things I Learned At The HAE Conference October 20, 2008

Filed under: being a sickie — Diana @ 9:38 pm

(1)  Because I am Type III, there is only a 30% chance that the new treatment, Cinryze, will work for me.

(2)  I am a “mutant”, meaning that I have no family history of HAE.  Twenty-five percent of people with HAE are also mutants.  I am not as alone as I thought I was.

(3)  A lot of people die of this disease.  A. Lot.  There have been three deaths this year of our patient community (estimates are that there are about 7,500 people in the US with HAE – the Association knows of more than 5,000 of them).   That’s a 1 in 2,500 annual rate of mortality.  One of the researchers showed us a few family trees and almost all of the people had died of HAE.  Granted, there was no treatment, even rudimentary, before about the 1970s.  But there are still a lot of people dying.

(4)  That’s not how I want to go.

(5)   I am both in better shape than I thought, and in worse shape than I thought.  While other folks seem to have more “severe” attacks (face, throat) more often than I do, I have more overall attacks than normal.

(6)  All attacks are supposed to be treated, but I’ve only ever treated for throat.  Not sure I’m going to change that – unlike some of the folks, my attacks tend to stay where they start.  Others have spreading attacks – it might start in the eyes, but will move down the face into the throat.

(7)  The quality of life for people with HAE, statistically, is less than that of people with diseases such as Chron’s Disease.  I’d once heard that our quality of life is comparable to that of a cancer patient.

(8)  Half of all HAE patients have lost a job because of HAE.

After having this disease for 13 years, and been diagnosed for the last four, I was surprised at my surprise at some of these facts.  For fuck sake, I’ve been hospitalized eight times.  I’m on disability.  I was on a therapy that could have killed me to save me from a disease that could kill me.

It has never been so clear to me that what I have is so….severe.  So….life threatening.  So….so….intense.  This is the first time that I’d ever actually considered tahat this might kill me.  That I really might pass this on to my kids, and that it might kill them.  Or I might not live to see them get old.

Maybe I’ve been thinking about this too much.


One Response to “Other Things I Learned At The HAE Conference”

  1. Barb Says:

    Yes, you’ve been thinking about it too much!

    Of course, having said that, it’s also good to have a healthy respect for your disease. I don’t want to lose my Sweetie because she didn’t get treatment when she needed it. On the other hand, dwelling on it when you don’t necessarily need to won’t do much good, either.

    I’m sorry the conference was just a big selling-pitch. Though, I thought you might have suspected that before-hand, given that it was put on by BigPharma. What you could have done was try to find some of the others who were not worshipping the drug company (there HAD to be others) and gone out for drinks with them to do your own networking.

    Plus, at least you’re armed with a bit more information, AND you’ve met others with HAE. (What can I say, I’m a glass-half-full kinda girl.)

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