Story about Hereditary Angioedema .

A Hereditary Angioedema story

Dec 2, 2


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 diagnosed and found the HAE web site. I have done loads of research and talked to numerous family members and have not been able to find anyone in my family history that has had symptoms like this. I guess it has to start somewhere though. I pray every day that this is not passed on to any of my children or grandchildren, I woud feel so awfull. I have type 3 and I have the Firazyr to help me control my swells. It is, to me, the best thing on earth. Before I found out what I had and recieved meds to help, I had so many life threating swells that I didn't relize were life threating. Life can be scary sometimes and this just increased mine 10 fold. But with the grace of God and the people that work to find a cure, we will get through this.

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2 comments
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I just wanted to quicky say I totally understand.  I took my first Firazyr shot a few weeks ago for a stomach swell.  It wasnt until I looked back I realizedI've had a few throat swells ( in the past years) and had no idea what they were.  Thank God for some sort of relief and rescue meds.

Commented 2 years ago Katie 65
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I'm also the only person in my family that has HAE. Thank God my daughter doesn't have it. It's a scary disease. On numerous occasions we could have died of throat swells, but we're still alive to tell the world what this disease is and what we experience on a daily bases. You're not alone!

Commented 1 year ago marijk 10

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