My Story

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It all started in Kinder or First grade... i had a swell in my genitals and the nurse called my mother.  My mother took me to the childrens hospital where a Woman Dr. from Germany was working there and happened to know about this condition becouse it was very common where she was from I think.  (i was 5, i am trying to remember...i still remember a little bit )  then it all went down hill from there.  Year after year it got worse,  then when i was 8 they found out i had one kidney (born that way).  The HAE got worse by the time i hit puberty.  Lots of missed days of school due to stomach swells,  terrible pain.  i would be up all night long vomiting every 5 min.  no, really... i would time myself how long in between bouts to the bathroom.  splashing water on my face as i left, i was getting really dehidrated and weak.  i looked like a ghost in the mirror.  the pain was sometimes unbearable.  yeah, i often thought it would be ok to take my own life just to not feel pain anymore, but the thought of pain that i would cause my family by doing so kept me alive.  when i turned 16 or so, i had my first throat swell.  talk about being scared to death, geez...all becouse i wanted my tongue peirced like everyone else...lol.. I had been started on many different steroids from the age of 10 till 33 when i started the new infusions.  In 2004, i had the worst throat swell of my life, it became my "come to Jesus" moment.  i went to the er on sunday evening,  long story short... they intubated me and put me in a medically induced coma (i think thats what its called) where i went to sleep sunday night, and they woke me up on friday night, in a different hospital.  tubes everywhere...welll thats the cliff notes version of my story.  i have now been on Cinryse for a little over 3 years now and what a difference.  i am married and have 2 beautiful kids that mean everything to me.  My daughter has been tesed for HAE 2 years ago and was negative.  My son will be 3 this month (october, 2015) and we wont test him till after he turns 4.  My amazing wife has put up with alot of crap with me being sick and i just simply dont know what i would do without her...  Stay Swell free my friends... life is too short.