Base

Name

Amy Fuller

Nickname

amy-fuller

Year of Birth

1969

Gender

Female

Location

Orlando Florida

Relationship

Patient

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!!

How did you hear about us?

Other

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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