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TOPIC: Hereditary Angioedema

Hereditary Angioedema 3 weeks 9 hours ago #3396952

  • Youngatheart
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I have a very rare condition called Hereditary Angioedema or HAE for short, which causes swelling in any part of your body, from an arm or leg, or in your stomach which is very painful, to your throat swelling which is pretty scary. I was diagnosed 40 years ago, and take a steroid every day. I passed it on to my son and 3 daughters. My son passed it on to his son, my youngest GS. My eldest daughter passed it on to her daughter who has it worse than all of us. Now a days there's an injection to take if you get symptoms which my three daughters have, and they can inject themselves. My eldest GD who has it worse than everyone has to inject herself 3 times a week. It can only be passed from mother or father, So hopefully it might die out in my family sooner or later. None of my GGS's have it.

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Hereditary Angioedema 3 weeks 8 hours ago #3396981

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Youngatheart.
How unfortunate is that, what a sad story
But as you said there is a new treatment for it (injections) and hopefully when your GG kids get older there may be better ways again of treating it.
I have had a life long problem with Psoriasis,,and from me my son has it.
I hope I have also passed along to him some positive genetic threads.
Len

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Hereditary Angioedema 2 weeks 1 day ago #3400870

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never heard of it before, sounds awful ,hope you dont suffer too much

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