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Which advice would you give to someone who has just been diagnosed with Spinal Muscular Atrophy?

Advice for the newly diagnosed with Spinal Muscular Atrophy, written by people who have lived it. What they wish they had known on day one.

Spinal Muscular Atrophy advice
6 answers
Find other families, become friends, share experience and stories.

Posted Feb 22, 2017 by Daniel 1011
Dont let sma defeat you. You can do it, go on and face it and let sma challenge you. We are all humans, no one is immortal, every one has to face the path of birth, disease and death...

Posted Feb 23, 2017 by ugyen 1000
Never give up!

Posted Feb 25, 2017 by Andrea 500
Translated from spanish Improve translation
There is treatment,
Tell me about the disease
I would be idly

Posted May 10, 2017 by Carmen 1370
Translated from spanish Improve translation
I would have gustadi or hear that there is a cure .

Posted Aug 3, 2017 by Marycielo 2000
Translated from french Improve translation
Bar you with your friends and does not smoke excessively,however, for rails there is no contrindication

Posted Nov 22, 2017 by 2000

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Stories of Spinal Muscular Atrophy

SPINAL MUSCULAR ATROPHY STORIES
Spinal Muscular Atrophy stories
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 and ta...
Spinal Muscular Atrophy stories
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...
Spinal Muscular Atrophy stories
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. htt...
Spinal Muscular Atrophy stories
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.
Spinal Muscular Atrophy stories
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Spinal Muscular Atrophy forum

SPINAL MUSCULAR ATROPHY FORUM
Spinal Muscular Atrophy forum
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...

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