A lifetime with HAE
Hello... I was born with HAE. Problem was, no one knew what was wrong with me. I would swell. Hands and feet mostly. But when I had an abdominal attack. It was horrible. I remember missing every school play in elementary school. I would get nervous and scared the day before and get sick. This went on till my mid 20s. My older sister who had never showed any symptoms. Started swelling. Being married to a military man. She went to the base medic. He asked her if anyone else in her family would swell. She said , yes.... he did a C1 test and told her she had HAE and that I should be tested.
I was tested and they put me on Stanazol (winstrol) steroids... they helped a little I guess. But I would still have abdominal swells that always sent me to the ER. Shots of vistarol and phenigan would knock me out. But it took days to fully recover.
When the Cinryze became available. My two adult children got in the program. They told me how great the Cinryze works. So I too got onboard. That was 2013 and I have very few attacks. And if I do have a attack. I use Firazyr and it stops it in its tracks.
I wish they had these drugs when I was younger. I wonder what difference it would have made in my life.
Bottom line... I am grateful they are available now. At 53 life is much better with the available drugs.
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