Di Has Stories…

(and they’re all true)

On My Mind July 14, 2006

Filed under: being a sickie — Diana @ 1:22 pm

As I think I have mentioned before, I have a very rare disease. According to the epidemiologist that I went on one date with, a rare disease is considered to affect 1 in 10,000 people. What I have affects 1 in 50,000 to 1 in 150,000 people. Really effing rare, ok?


There is a group of people in the community that are trying to get us some airtime on major network programs – like Dateline, etc. (I don’t really watch TV, and I don’t know what’s out there, but this is the name that has been bandied about.) We need to ‘raise awareness’ about this disease, and make sure that the nation knows of our suffering.


You know what? STFU. Yeah, this disease is pretty bloody miserable, some people have lost family members from it, and our country is so un-enlightened that we are unable to get a treatment that has been available in Europe for years. HOWEVER, even by the most conservative (1 in 50,000) estimate, there are less than 6,000 of us in the US (and 130,000 odd) in the WORLD that have this. The drug companies are working on clinical trials, and we should have some treatment within the next couple of years. Harassing the news media is not going to get us the good drugs any faster.


Here’s what I foresee happening:  us swelly freaks are going to get some media attention (the woman behind this wants Dateline to follow her around as she has attacks and goes through the clinical trials….when I have swelling, I tend to stay OUT of situations where I look like I have recently escaped a bar fight), and ‘raise awareness’ and suddenly the doctor’s offices (already overloaded) are going to be flooded with people that think they have HAE. You know what? You don’t. Seriously. I’ve had it for 11 years, been diagnosed for almost three, and *I’ve* never met anyone else that has it! I can bloody promise that you don’t.


(Think of it…think back to diseases that the media made a big deal about, and now everybody has it – whether the fit the clinical profile or not. Look around your office – how many claim to have carpal tunnel syndrome? Planter fasciitis? Chronic fatigue syndrome? Multiple environmental allergy syndrome? And how many of them have been diagnosed by a qualified clinician?)


People with HAE need to educate those around them about the disease. I’ve had to pass it on to my friends, family, coworkers, and my sweetie. It’s something important that they need to know about me in case I have a flare. And, for the most part, this being a hereditary disease, parents know what to look for in their children (50% of children who have a parent with HAE will get it also). (I am in the miniority that there is no traceable family history – although I have a suspicion that a lot of the random stomach trouble that plagues my family – as well as my great-grandmother’s “stomach cancer” for which she had a large part of her innards removed…only to find there was NO cancer…might have been undiagnosed HAE). It’s such a life-affecting disease that most people don’t give up seeking diagnosis and treatment until they finally find out what it is (my nine year quest for diagnosis seems to be about average, from what I am reading in the community).


So, my question is, isn’t our news media time better spent educating Americans about REAL problems, such as our inept leadership, the never-ending and completely bogus War on Terrorism, the failure of the Medicare Part D program, and how they can become and help others become more productive citizens?


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