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Showing posts from January, 2018

Marfan Syndrome Awareness Month 2018 (My Feelings On Diagnosis)

When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the Doctor was trying to tell me I was about to die. Panic was rising within me and shock waves ran through my body as she said the words Life Threatening Disease . My feelings have changed a bit since then, and I no longer want to punch the Doctor in the face, but at the time that was exactly what I wanted to do, because I was a furiously angry teenager who was literally just getting over spinal surgery and the last thing I wanted to hear was that I had another terrible health problem to contend with. I’d already felt isolated for the last few years due to the health problems I'd endured throughout my childhood, and now here I was again, sitting in front of the Consultant being made to feel even more abnormal as she told me I was the victim of a rare and serious "disease"  I vaguely remember storming out of the clinic that day