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Spinal Muscular Atrophy stories


ABOUT THE ANNABELLE ROSE FOUNDATION


Charlotte & Wayne lost their first daughter Annabelle Rose when she was just 7 months and 12 days old due to a genetic muscle wasting condition called Spinal Muscular Atrophy. Annabelle had Type 1 which is the most severe form of the condition an...

Views: 875 Jan 23, 2016, 2:40 AM by Annabelle Rose Burfitt

I'M SMA TYPE 0


My son Grady was born on May 15th 2015. He wasn't due until June 19th but since I had polyhydraminos my water broke on May 13th. I had noticed while I was pregnant that Grady didn't move near as often or as much as my daughter did during my first pre...

Views: 801 Jan 22, 2016, 5:34 PM by Grady Landrum

A MAN WITH SMA IN A DEVELOPING COUNTRY


I was born on March 5, 1949, in a poor neighborhood of Lima, Peru, in a time where most houses had no electricity and radio music was a luxury only afforded by the few. The television had not yet come to the country and Internet was unimaginable....

Views: 721 Jan 22, 2016, 10:01 PM by Julio

KASIANENKO ALEKSANDRA.


My daughter has a SMA type1 , the start of the disease in 5.5 months. She is 17 months. She is breathing on her own. Little holding her head. Raises handle. She begins to talk.

Views: 640 Jan 26, 2016, 4:30 AM by Kasianenko Evgeniia

BRAYDEN'S VOYAGE


www.braydensvoyage.com 

Views: 598 by Christina Janetzke

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Spinal Muscular Atrophy forum


RECENTLY DIAGNOSED AND BOY DO I HAVE QUESTIONS.


No less than two neurologists have diagnosed me with SMA, but I have to say, I'm pretty sure I DON'T have it. I'm strong, graceful and powerful... the only symptoms I'm experiencing are speech slurring, weak tongue and lips and mild difficulty breat...

Views: 417 Apr 30, 2017, 8:43 PM by David

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