Stories of Hereditary Angioedema

STORY
Hereditary Angioedema stories
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...
Hereditary Angioedema stories
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...
Hereditary Angioedema stories
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...
Hereditary Angioedema stories
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...
Hereditary Angioedema stories
i was dx in 2008 with my first fasel swell . im hae type 2 . im co founder of the facebook group ( https://www.facebook.com/groups/156649074393978/ )

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Hereditary Angioedema forum

QUESTION
Question 434
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...
Question 433
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 free of ...
Question 439
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 ...
Question 435
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...
Question 438
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 ...

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Statistics of Hereditary Angioedema

24 people with Hereditary Angioedema have taken the SF36 survey. Mean of Hereditary Angioedema is 1722 points (48 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

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