Apparently, FOX has a show called “House” about a doctor of some variety. According to friend Julie, he is a rare disease diagnostician. I’ll have to trust her on this one. This morning on the HAE emails, there was some kafuffle* that there was an HAE sub-plot on last night’s episode. You can find the summary here.
I read the summary of the show, and nitially, I was thrilled that my very rare disease was getting some media play. Until I read the following sentence in the recap:
Foreman prescribes Tracy and Jeremy daily pills which will stabilize them because angioedema is treatable.
Uh, hellz no.
Hereditary Angioedema is caused by either a deficiency or defect in the C1 esterace inhibitor protein – you either don’t make it, or that which you do make doesn’t work right. The only definitive treatment is to replace that protein via concentrate, and that is not currently available in the United States (although it is available in other countries, and can be illegally imported – for about what I bring home in a month).
There are some other treatments that are used that can lessen some of the symptoms, such as androgen steroids, with all their fantastic hairy side effects. Some people have found some other things that lessen symptoms, such as avoiding wheat. I have found that avoiding processed foods lessens my attacks. Because HAE people also tend to have lots of allergies, it’s hard to tell where the line is between the allergies and the HAE, and when the allergies trigger the HAE symptoms, as stress plays a key role. It’s a very complicated disease.
But I can tell you for sure, for sure, that there is no “pill” that can “treat” this disease.
This would have been such a great opportunity for a television show to make a statement about a rare disease and tell the viewing world, Hey! Here is something that is not currently treatable in this country, and there are people that are suffering and dying needlessly. There is treatment available, and it’s safe and effective, but the FDA is sitting on its hands. Let’s help these people get treatment. It’s been available elsewhere for a long, long time.
Instead, “House” choose to use this as a television device to make an improbable situation – hey, neighbors, you’re really related. Have a pill. Your lives are ruined, but your disease is treatable.
Add this one to the list of reasons I refuse to watch TV.
*Yeah, that’s in spell check. Sa-weet!