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My name is Kathleen and I was diagnosed with Systemic Mastocytosis nearly 18 years ago.  I would like to share with you the details of my diagnosis, my treatment plan and the ongoing management of this rare disease.  Today my Mastocytosis is stable, but that hasn't always been the case.  

For a long time I tried to feel better and get back to health by myself.  So when I was feeling bad, I tried to change things in my diet or to get help.  When I was in pain, I consulted many professionnals.  When I was worried for my health, I saw my family doctor.  Eventually I felt that it was not normal to feel everyday that something was going wrong with my body. I even began to wonder if I was a hypochondriac or just too anxious, so I was keeping secret or overlooking different symptoms to my doctor.

Little did I know that the symptoms and perceived allergies that I struggled with for years were actually part of a larger illness that would be diagnosed as Systemic Mastocytosis.   This first major episode was diagnosed as vertigo and treated with the appropriate medication.  My health began to decline quite rapidly from this point on.  

My diagnosis happened quite by accident. I was 31 years old and having a regular, annual examination by my family physician when he noticed some rash-like spots on my thighs. I had noticed them, but hadn’t thought anything of it. He referred me to a local Dermatologist who did a biopsy and diagnosed Cutaneous Mastocytosis. She suggested I familiarize myself with the disease, gave me an Epi-Pen and referred me to an Internist. The Internist did a bone marrow biopsy along with some other tests and suspected Systemic Mastocytosis.