Short Bio |
I am a 52 yr old female, diagnosed with MFM (Myofibrillar Myopathy), a sub-set of Limb Girdle II, by Dr Selcen at Mayo Clinic Rochester in 2012, after 8 years of searching for a diagnosis. She found I had a new mutation, Titen, within the MFM group. I have just started working (new) as a Patient Advocate. I worked as an RN for 25 years, in ICU/Trauma/flight nurse/SANE/masters in Forensic science. Although I cannot work, or spend time in Africa with medical mission work anymore, I’m now on the other side of healthcare and would like to help anyone who needs it. It’s a rough road for a rare diagnosis and a new mutation, or any progressive disease, with no cure or treatment options, and with absolutely no answers. But I will modify and adapt, and with Gods strength keep moving:)
God Bless!!
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How long have you or the person that you are caring for had MD? |
I’ve had MFM for 15 years
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