I was born with a condition called Hereditary Angioedema, and grew up thinking it was this silly condition that sometimes would cause me to have a swollen hand or foot. My mother is fortunate, she has never had severe attacks, so assumed it was not a big deal. When my eyes swelled shut in high school, we chalked it up to heat stroke. The fact that I got the stomach flu 5 times a year was because I was so active and didn’t sleep enough. It wasn’t until I was pregnant with my second child that we started to put two and two together.
For me, attacks are usually in my abdomen. My intestines swell up until they close, and I am violently ill for what seems like eternity, but is actually 24 hours to 3 days. The condition is so rare, most doctors haven’t heard of it, and few take the time to look it up. I can’t count how many times I have been to a doctor or the Emergency room and had them stare at me like I was insane. I’m sure somewhere in all my records there are notes like “she’s on drugs” or “she’s got bad gas and she’s a drama queen.” I work, I have children, and this condition makes my life stop in it’s tracks without warning–dramatic? Yes. If you have ever seen someone’s hand swollen to the point where it looks like it may pop, you would not blame someone for freaking out when people tell her to “take it easy and wait it out.”
A couple years ago I ran across the Hereditary Angioedema Association online and it changed everything. I spoke with one of their coordinators, Lois, and she understood what I was going through! I learned that there was a trial at UCLA with an amazing doctor and I should enroll, so I did. When I met Dr. Riedl and his team it was like stepping into the sunlight from a dark cave–a dark cave that I get thrown into frequently, but now I have someone on the outside to throw me a rope.
Recently I added a treatment to my regimen called Berinert–it’s an IV infusion that I have been attempting to give myself for the last few months. It’s hard and weird and makes my husband cringe a little, although he tries his best to help me as I blow out my veins and get frustrated. I will tell you many tales of this in coming posts, but I’ll keep this one blood and tears free–I want you to come back for more.
I’ll leave you with a photo of one of the many bruises from my last infusion.
My life with HAE 
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