I have been suffering from what I think is Hereditary Angioedema for several years now, but have been unable to get a real diagnosis from a doctor. Most doctors don't know what is going on, and I just get shuffled between doctors.

Starting in 4th grade (age approximately 9 or 10), I began to have bouts of severe stomach pain. The first couple times it happened, I was taken to the hospital and doctors thought it was an appendicitis. I have suffered from these bouts since then, but they have mostly increased in frequency and now (at age 24) happen about twice per month (sometimes more). I get crippling stomach pain, seemingly with random onset, that lasts for usually 24 hours (the pain isn't totally gone by then, but is much less). Diarrhea does not occur in the beginning (sometimes at the finish of an attack).

When I was 17, I began to get episodes of swelling in my face, hands and feet. With the first episode, I woke up with slightly swollen eyes that swelled completely shut within a matter of minutes and lasted all day.

For the first year, I had episodes of swelling (usually my eyes swelling shut, or my lips swelling so that I looked like one of the Simpsons, or my fingers swelling so I couldn't move them) about every month. In particular, my wrists would swell so severely that it looked like I had a golf-ball under my skin. After that, the episodes increased to about every two weeks, and by the time I was 20 I had two or more parts swell EVERY DAY.

At my worst, I usually had my hand or wrist swollen along with the instep of my foot or my lip (often times it was either the top or bottom lip, not both at the same time). I could tell when I was going to swell because of a tingling sensation, but couldn't really do anything about it. I took antihistimines for a while, but they didn't seem to help and I was constantly swollen.

On one particularly bad instance, my bottom lip swelled over a period of 3 days, and by the end of the third day it swelled so badly that it actually split and there was clear liquid coming from it. I was taken to the hospital where I stayed overnight, but again the doctors didn't know what was wrong with me.

Like I said, I can tell when an episode is coming on because I get a tingling sensation about half an hour to an hour before it happens. There is no presence of hives, but I do sometimes get a local reddish rash if it happens on my hands (it's not usually present until after the episode). I lose a lot of feeling in my hands or feet when swelling occurs, but I have attributed that to the swelling cutting off circulation.

The only family incidence of similar events is that my father's ear swells about once every 3 months and lasts for about 48-72 hours. He also seems to remember when he was young that my grandmother used to get episodes of swelling.

My only other real medical problems are Samter's Triad and an enlarged thyroid. A couple doctors have tested my thyroid, which seems to be functioning just fine, thinking that I may have some thyroid disorder (or even cancer) that was causing my edema.

Luckily, the severity and number of occurances of my edema has gone down drastically. Now I only get episodes of the edema in my hands/face/feet about once every couple months (this has been for the last year and a half). But the occurances of the stomach pain have remained steady at about once every two weeks.

I am getting quite fustrated at the lack of an actual diagnosis, and I worry that at any time the edema could get bad again. Does anyone know anything about HAE, and do these symptoms seem to fit that diagnosis?

My history is similar. The idiopathic angioedema I experience has lasted 20+ years, coming and going for periods of time. This last episode has lasted for about a year with outbreaks almost every day. I find no relief from any of the meds the allergy specialist has give me. Any help with alternate treatment is welcome.

Hello -

I have HAE, and it's very similar to what you describe, only I seem to have missed the stomach part of things. Check out hereditaryangioedema.com - Donna, the clinical trial coordinator, is very knowledgeable, and can probably give you the names of some docs in your area that have worked with HAE. It's hard to find - I was improperly diagnosed for 9+ years.

Good luck!

Hi all
My wife and her family have suffered with HAE for many years they have all been prescribed danazol tablets,this has worked in keeping the symptons down.
Keith