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Only 12% of patients are aware of research for their disease
It takes rare disease patients 7 years on average to find a diagnosis
50% of research is shuttered due to inability to find patients
There are 7,000 untreated rare diseases, affecting 1 in 10 of us
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I was diagnosed at the age of 27, after nearly 10 years of untreatable diabetes and a number of other things. I was treated with the wrong medications and fought for doctors to look for the answers. We went to several doctors before finally getting one to listen. By this time my body was shutting down and the diabetes was taking over.
I was diagnosed at the age of 58 by Dr. Elif Oral after my daughter started treatment with her. I always knew that there was something wrong. The years of uncertainty of my body grew worse over the years. Complications during simple surgeries, cholesterol sky rocketing along with my blood pressure in my 40's should have been enough for my doctors to look for an answer and help.
My hope is that no one touched by Lipodystrophy will ever have to walk this path alone. I have met some amazing people in my journey and it is time to share our knowledge and our strength. I consider myself Blessed to see us United!
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