Jordan's Story

My name is Jordan and I am fixing to be 16 years old. I just got diagnosed with HAE in January 2012, but I assume I had it for about a year.

I have played sports my whole life. I am very athletic. Last Fall, I took a hard hit on the stomach while playing volleyball. Ever since then I have had the most severe abdominal pains, along with nausea, diarrhea, vomiting, passing out, and dehydration. My mother and 3 of my cousins have been diagnosed with HAE, so it led us toward the idea of me having it myself.
I have had problems with my tonsils, hip, and abdominal areas swelling already. Problem is, no one around where I live knows anything about this disease.

We travel 2 hours away to the doctor in Missouri that diagnosed me. Everything is hitting me all so fast, between stressing about school grades and work, being told I can no longer play sports,
informing the people around me about HAE, finding the medicine to treat it, and knowing when to inform someone while having an attack.

I have been in the hospital once and am prepared to go at any second, if needed. Hopefully we get the hospital to understand the right medicine and everyone informed and prepared.

Thank you for reading my HAE story….

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