Hereditary Angioedema swellings and allergies

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Hereditary Angioedema swellings and allergies

Postby Schip » Tue Apr 27, 2010 12:10 am

I've been very busy since New Year as my youngest aged 23 has started to suffer serious anaphylatic reactions to various things to the point of needing 2 epipens, air ambulance collected to get her to a specialist allergy centre in a bid to save her life.

As part of my list of health problems I have been 'diagnosed' with IBS, Menieres disease, Adrenal rupture, premature menopause, psorasis, allergies, the list is endless. They are now suspecting that I too am affected by this genetic dissease as its a dominant trait so you either have it or don't BUT you can be asymptomatic and affected. As this disease causes massive painful swellings anywhere in the body to the point some end up having investigative abdo surgeries, can cause balance problems, allergies alsorts of issues related to the fluid loss during an attack they are now suspecting my swellings etc are a milder form.

The main reason I am posting this is for the young girl who posted a picture of her stomach swelling and other symptoms which have rung a very loud bell with my daughters situation who can do exactly the same on a daily basis, suffer terrible fatigue, pain, nausea, headaches I just had to come and say this is what its called it might just be helpful to her.
Unfortunately I can't find it or remember who she was etc so just hoping you guys can help get the information to her, this is a rare disease approx 1 in 50k, is treated with C1 protein replacement drugs/infusions depending on circumstances. This was only considered in my daughters case when antihistamines failed and she was still swelling in her face and throat, from an allergic reaction as they thought. If this helps just one other find an answer I'd be a happy woman.
Schip
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Location: Derbys

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