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HAE – One Mother’s Battle With a Lifelong Illness

September 30th, 2011 by Mary Kay Holmes

I think I have told this person about my condition about 300 times.

“Is it your Thyroid?”

“No, it’s a condition called Hereditary Angioedema. Remember when I missed your birthday party because I was sick?”

“Yeah, I just assumed you didn’t want to come.”

When you have an extremely rare disease, these conversations happen all the time. People assume you miss events because you don’t want to attend, assume you are telling them you feel sick as an excuse. For some reason, no matter how many times I explain it, it always comes back to be being a liar and a drama queen.

I have a rare disease called Hereditary Angioedema, and I have had it my whole life–you may have grasped that from the whole “hereditary” part.  To give you an idea of how rare, the first medications for treating this disease were released within the last couple years, primarily because there are not enough people living with it to merit the drug companies taking an interest.

Basically I am missing a blood protein—C1 inhibitor.  For those of you fortunate enough to have this in your blood, it means you can open a cabinet into your face without the entire thing swelling up until your eyes shut. If you are lucky, your throat won’t swell shut and require intubation. The C1 keeps the cycle of inflammation from going crazy in your body—since I don’t have this, it’s uncertain when my body will go nuts.  For me, my attacks are usually abdominal—my intestines swell until I look pregnant, and eventually swell shut. I am violently ill for 24 hours, then wrecked and in pain for another 48.  Up until recently, there was no medication, no treatment, no relief.   If I go to the emergency room, which I have often, they have never heard of it and have no idea what to do for me. Sometimes I get anti-nausea medication, sometimes just a bag of fluids. 99.9% of the time, I wish I had just stayed home.

So please don’t take it personally if I ever cancel on you—I swear, I’d rather be anywhere than where I am at that moment.

When Mary Kay isn’t producing photo shoots of Daily Hot Guys, she’s ranting about her fat foot or drinking kombucha at her HAE blog.

Mary Kay Holmes (12 Posts)


6 comments

  1. I am so sorry to hear this, though I am not surprised. Some people just don’t get it. Sometimes it’s the closest to us. Don’t worry about what other people think. Do what you can, the people who really care will get it. Becuase they’ve taken the time to understand.

  2. On top of all you do, you are dealing with this – you are amazing!

  3. Hoping to share many more of my stories here–this illness comes with great tales of frustration! :)

  4. Thank you for sharing your story. I’m sure it comes as no surprise that I had no idea this condition existed. I’m glad I know now.

  5. Thank you for sharing your story. It’s so sad that what drives the medical industry to produce medications isn’t about helping people but about dollars and cents. I’m glad there is finally some kind of medicine for your condition. Hopefully, it will continue to gain attention and thus funding and the research necessary to help more people like you.

  6. Wow. I, for one, have never heard of HAE. So sorry for your pain, chica.

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