My HAE Story

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My earliest memory of HAE symptoms was when I was about 6 or 7.  I would occasionally get the abdomen swelling, be sick and sweating all day, then I would finally vomit and then feel better, go to sleep and be better the next morning.  I consider myself one of the lucky HAE'ers because I do not have the disease as badly as many others including those in my own family.  I get abdomen attacks occasionally and limb swelling about once or twice a month.   I think that is the most interesting and frustrating part of this disease for me; never knowing how bad the attack will be, wondering why my sister and mother suffered so much more than me and then, watching my own daughter struggle with symptoms worse than mine.  I have felt so helpless, so guilty, and it has shaped my life constantly worrying about myself and my daughter, having to plan things around attacks - the "oh, well she was sick today, so that means we can do this or that tomorrow, better fit it in this week before the next attack".  Things like that.  

The disease seemed to increase once I turned 27 and started doing some recreational no-no's.  Doing some of these things really triggered my disease causing my first trip to the hospital when I was 30.  I was so sick, vomiting, diahrrea, barely a pulse or blood pressure.  The ER doctors knew nothing... They thought I was a drug addict or alcoholic and put me through the gammet of tests, pressing on my stomach, enimas, etc.  By the time they finished, they just threw up their hands and had no idea what to do.  They put me in a wheelchair and sat me outside a room so they could make room for more emergencies.  They gave me a regular size bedpan and I finally vomited...needing another bedpan.  The nurse said she had never seen anyone vomit that much.  So basically, I went through my first real abdominal attack inside the hospital (about 8 hours) with the ER staff trying to help, but everything they did just made me worse or was unnecessary.  

My brother in law picked me up and took me to their house.  My parents came over to see me and my mother bent down next to my face and said "oh honey, it sounds like the disease...".  I couldn't believe it.  Worst pain I had ever felt, thought I was dying, like Alien was going to burst out of my abdomen.  

Ever since then, I have had to "deal" with it.  There was no medication really except for steroids, which I didn't want to take.  I have learned over the years to really hate this disease, changed my life, and unfortunately, not in a good way.  There's nothing that I've learned except the knowledge that the attack will go away, so look forward to feeling good - until the next time.  I guess that's the only thing I've learned, knowing how "BAD" really feels, you appreciate feeling good and make the most of it.  I've learned what an amazing daughter I have.  She has really grown into an amazing young woman, starting out in life, doing things on her own, going across the country to college, etc.  I'm just so happy that we have better medication options and really cannot wait for the day when all we have to do is take a pill or we can have some sort of gene therapy that will erradicate this disease.  I would give anything in the world to take this away from my daughter, so she never has to worry about it ever again.