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Joseph's Story

My name is Joseph.  I am 73 years old and was diagnosed with HAE in 1970. I was born in Pennsylvania where I lived for 33 yrs. and then moved to New Jersey where we lived for 34 yrs, and then moved to Delaware where we now live.

I am the only person of my original family to have HAE.  I have 2 children, and 2 grandchildren with HAE.  I also have 2 children without HAE. The HAE showed up in every other child. I am told by my parents that when I was about 3 yrs. of age, I would wake up from naps with swollen eyes and sometimes feet. I’ve been through so many allergy tests, I can’t remember them all.    I lost 2 years of school as a child through what was thought of as stomach attacks. As I got older, I seemed to have less attacks, but every so often I would swell up – my throat, my abdomen, my arms and feet, and sometimes my scrotum.  I had a couple surgeries through my teen years with no effect on my HAE, and one in 1998 with no change.

I spent 2 years in the military where I had several attacks. The military sent me to Walter Reed Army Hospital, where they also performed allergy tests with no particular results. I returned to active duty.  The doctor that diagnosed me in 1970 was on vacation from the military when I was at Walter Reed. He couldn’t believe I was there when he wasn’t!

Through my early married years, the attacks continued and indeed almost cost me my job. After many attacks and trips to the ER, the ER doctor sent me to a new physician in Moorestown, N.J. He is the one that was on vacation when I was at Walter Reed.  He finally diagnosed me with HAE. He started treating me with allergy shots and prednisone.  From 1970 on, I had less and less attacks.  As I mentioned earlier I was pretty lucky with surgeries. Then when a C1-inhibitor infusion became available, I used it for 3 surgeries with no adverse effects.

I currently take an androgen steroid daily for my HAE, and have not had an attack in probably 15 years. My wife and I celebrated our 51^st anniversary in Nov. 2010.

Both of my children that have HAE are females and both have had children. The one had a child in the 80’s and we almost lost them both. She also has HAE, but they are fine today. The other one has 2 children – the boy has weekly infusions. He is doing well and was starting to have frequent attacks when they got him started on his infusions. The other child is a girl and she has no HAE.

Thank you for reading to my story.