I was just introduced to a website/magazine called But You Don’t Look Sick, about living with diseases and disabilities that aren’t visible to the naked eye.
As most of you know (I haven’t kept it a secret), I have Hereditary Angioedema. All people have a protein in their blood called C-1 esterace inhibitor. It stops your mast cells from exploding and filling the surrounding space with fluid.
With HAE, you either don’t have that protein, or the protein that you do have doesn’t work properly. Or, for the more lucky of us, our blood counts show the protein, the (badly flawed) function tests thinks that it works, but we have all the same symptoms as a clinical HAE.
And, even though it’s called “hereditary” some of us don’t know where we got it. None of my family members seem to be affected, but I don’t know if my children will be.
This is also an “orphan” disease. A “rare” disease affects one in 10,000…HAE affects one in 50,000.
I was undiagnosed for nine years. I was told I had cancer. I was told I had allergies. I was told that it was all in my head. I was told I would never know what was wrong with me. I was told that it would probably kill me.
I finally found a doctor who had SEEN HAE before, and could diagnose me, and explain what goes on with my body. BUT, there is no treatment that is legal in the US that is effective, i.e. replaces the C-1 esterace inhibitor. There are clinical trials going on right now, but safe, effective treatment is several years away.
Why am I telling you about this now? Because of this site/article that was just forwarded to me about the “spoon” theory. It’s hard to have something wrong with you that others can’t see…those of you that have seen one of my episodes know that this is REAL and that I can’t do much about it, but I don’t usually show that (I hate the stares and questions) and there are lots of other fun things that come along with HAE, even when I am not having an episode. There is not a moment in any day that I am not aware that I am “sick”.
So, please, read the attached article, and send it to your friends and family that may be dealing with a chronic illness.
And, as always, I am blessed to have you all in my life!!