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Ask the HAE Expert

Our HAE expert is here to answer your most pressing questions about the disease

  • At age 12, several months before she got her first period, my daughter began having episodes of angioedema, waking up with swollen lips/tongue and sometimes more severe swollen lips/tongue/inside of ears/hives/diarrhea/vomiting. We often had to give an epi pen and go to the ER; sometimes it happened shortly after eating (often after ice cream) but more often it was 4-5 hours after eating and would wake her in the middle of the night. Her doctors did lots of skin and blood testing (skin testing was always vaguely positing but blood testing to dairy, peanuts, etc. was negative). Her doctor still decided to have her be dairy and peanut/tree nut free. It has been 2 years now and the episodes have gotten less frequent. She takes a high dose of 2 different antihistamines twice a day. The attacks in the past have often happened after stressful or emotional events. She also gets swelling of hands/feet in cold weather. She still has attacks of abdominal cramping and diarrhea several times a month. We recently switched allergist because my husband and I are not convinced it is a food allergy. Our new allergist agrees and thinks she has dermatographia and chronic uticaria. I stumbled across your website and had a couple questions. Does this sound like it could possible HAE? No one in our family has similar issues though. If not HAE, is there anything else that should be on our radar? Any testing we should get done? (All thyroid testing has been fine). Thanks for your help!

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  • I have a patient who fits the picture of HAE type III. Can you provide me with some guidance as to laboratory testing that will aid in diagnosis?

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  • My boyfriend has just been diagnosed with HAE. Reading about it just freaked me out. We plan to get married some day and have children. He has never had any severe attacks like the images I see on the internet. What should my expectations be? Is it definite that our children will have it?

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  • Hello, I suffered from hives and swelling from the age of 21-29. I have never heard of HAE and I guess my doctors did not either, because it was never mentioned. The episodes stopped and I thought I was cured, but here I am 44 years old and the hives and swelling are back and worse than they were 15 years ago. I was just admitted to hospital a couple days ago because of throat swelling. I spoke to my brother and he is having the same symptoms. Could I have HAE? I also had some blood tests done and my estrogen level is low. Does pre menopause make the HAE symptoms worse?

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