Story about Phyllodes tumor , Hereditary Angioedema.

Recent Diagnosis Of HAE Type1

Feb 16, 2016

By: Katie


Was sick and tired of being sick and tired.  I have no more body parts left to give (after having a Thyroid removed with cancer Phyllodes tumor removed from right breast, cysts removed from ovaries). In 2008 after the birth of my 2nd child I started swelling on my hands and feet and getting welts on and around knees, elbows, etc. (yes the rash and welts through doctors for a loop) then started the stomach issues the throwing up, I would tell doctors it felt like I drank some sort of chemical. No medicine they gave me like  Carafate would get to the burning.  It just seemed to go away on its own with time. Oy. I had been diagnosed about a half dozen times in my medical records but not once to my face.  I finally found the HEAA website and clicked on referal.  I found a wonderful doctor who put all the pieces together.  Turns out I have HAE type1 and horrific allergies to pollants.  She sent me home with a trial of Firazyr.  A week later I had a stomach swell and had a friend (who is a nurse because I was to chicken to do it myself) give me the shot.  My stomach swell went down within an hour and the nausea/vomitting was gone.  I would say that's a big win in my book ;)

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