Mine started in 2009 with my first swell, it was my lips and cheek. That is the same time the ucartia started also. It took my Dr. 5 years to find something to help me control and survive my Angioedema. I never knew how bad this could be till I was d...
Desde niño tuve que soportar los diversos episodios de AEH sin saberlo, pasando de medico en medico con diversidad de diagnosticos y ordenes de cirugias innecesarias, gracias a Dios no acudi a ninguna. Fue hace tres años que optuve el d...
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 co...
I was diagnosed accidentally, after seeing a TV show where the host talked about her HAE in 2014.
My first attack was at 8, when I was mistakenly hospitalized with appendicitis. The surgery wasn't done, because I felt better in 3 days. N...
Hi Everyone,
I am interested in understanding and learning about your perspective on treatments and services available for HAE. What happens when you lose insurance and you need to obtain treatment? During this time, are you given treatment fre...
Hi All,
For those of you currently (or in the past) taking Cinryze, Firazyr, or Kalbitor, has Shire always paid for your co-pays through the co-pay assistance program or was there a limit to how much they paid? I've also heard that the case managers...
Hi Everyone,
I'm trying to understand what it is like for people with HAE. Therefore, would you ever switch treatment? Why or why not? What happens if you lose insurance coverage? Are you still recieving treatment? Was there a time where you had to ...
33 people with Hereditary Angioedema have taken the SF36 survey. Mean of Hereditary Angioedema is 1637 points (45 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
Symptoms
Treatments
Amy
