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NON-hereditary angioedema?

By Anonymous July 28, 2011 - 11:51am
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please help me help my mother! after several years of being ill, and seeing 32 physicians within only one year, she has been told she has 'a very rare condition' and they are calling it NON-hereditary angioedema. so far, no physician she has been to has been able to help her. now they are telling her that since the swelling in the neck increases with time and episodes that she may have to have a tracheotomy. she is young - only 64 - and i just know that there is a specialist somewhere in texas where we live, or in the nation - even the world - who KNOWS more than any other about this condition and what they can do to help her become well or manageable.

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EmpowHER Guest

I am 55 and have been suffering from non hereditary angioedema since i was 13. Several years ago, after much research I saw dr Horan at Brigham Womens Hospital in Boston. I was place on doxepin, singulair and zyrtec and my conditon has improved tremendously.

Good luck

October 18, 2011 - 8:23am
EmpowHER Guest

Contact the US HAEA - www.haea.org
They can help.

July 29, 2011 - 7:55pm

I can understand your strong desire to find the right specialist and to get the best treatment for your mother. I did some research to familiarize myself with this condition. But, I am confused by your mother's particular case. Let me explain. I found information on hereditary angioedema, which is a rare and serious problem with the immune system that is passed down through families. If your mother has been diagnosed with non-hereditary angioedema, is this not the same as angioedema? Angioedema may be caused by an allergic reaction, or after infections or with other illnesses including autoimmune disorders such as lupus, and leukemia and lymphoma.
You might want to research university hospitals in your area that might have allergists who specialized in this condition on staff.

July 28, 2011 - 4:54pm
EmpowHER Guest
Anonymous (reply to Maryann Gromisch RN)

Has she had her thyroid tested??
Hashimoto's Thyroiditis can develop slowly and can cause what sounds like is happening to your mother. The standard TSH test does not always show that there's a problem. T4 and T3, tryptase, TPOAb, TRAb, and TgAb tests will give the full picture. Getting the Dr. to order these tests is not an easy task though. Good luck!

April 3, 2013 - 7:25am
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