Running For Rare Diseases
My guest today has endured a long journey of many years of illness and misdiagnosis.
Years of anaphylactic episodes for which she was treated episodically and sent on her way.
She saw countless specialists including, Allergists/Immunologists, Dermatologists, Rheumatologists, Gastroenterologists, Cardiologists, Endocrinologistics, Pulmonologists, Hematologists, Oncologists, Neurologists, Infectious Disease Specialists, and Clinical Nutritionists.
She was seen at some of the premiere medical institutions in the country and there were countless diagnoses & subsequent treatments. Being diagnosed with Severe Clinical Depression and Chronic Fatigue Syndrome angered her most.
Finally, in March 2011, after countless hours of diligent research, with her husband, she found a doctor who was a Mast Cell Disease expert. On April 1, 2011, she was diagnosed with Mast Cell Disease.
She had a bone marrow biopsy and according to the report, she had the signs /symptoms of myelodysplastic syndrome (MDS).
She continues to search out possible answers & treatment options for her illness & continues to raise awareness levels. She is a patient partner in the “Running for Rare Diseases” program that increases awareness levels of rare diseases and promotes diagnosis for patients.
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