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I Would Like To Give Everybody’s A Hug. Remember We Are Great People’s With Love In Are HEART.
My son has been diagnosed with a genetic pathology of VRK1 non5q SMA. It appears to be very rare with little to no information about it.
He has advanced atrophy of his right calf muscle and the beginnings of atrophy in his other calf. His gate is affected and has trouble walking normally. He lives in San Francisco and is currently being seen by 2 different neuro-muscular doctors at Stanford and at UCSF. He is being told that at this time there is no treatment and there is no cure.
Can anyone give me some insight or lead me in the right direction to get some answers for this diagnosis?
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.
I'm Curious What Others Experiences Are With Driving. I Live Near LA And Go To Work To LA All The Time, Curious If Others Are Able To Drive?
What Are The Steps To Get A Diagnosis Of SMA? What Kind Of A Doctor Would I See? I Live In Wyoming And Specialties Are Rare.
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