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What is the life expectancy of someone with Nemaline Myopathy?

Life expectancy of people with Nemaline Myopathy and recent progresses and researches in Nemaline Myopathy

Nemaline Myopathy life expectancy
3 answers
In very rare cases, Nemaline Myopathy can cause mortality in infants. However the majority of people with the condition will live average length lives.

Posted Feb 24, 2017 by Star 1270
I think during the first year it's very critical. Then the next few are also. The chances of lung issues is great. Strength can be gained with hard work. Maybe middle school age or teens go through froth and that makes it difficult again. Any cold can cause Respitory failure or other complications. Living longer is possible and always keeping up on treatments will help.

Posted Aug 29, 2017 by Mary Jo Draisma 2100
Translated from portuguese Improve translation
the only complaint of this disease can be a complication of pneumonia

Posted May 29, 2017 by Danielle 1150

Nemaline Myopathy life expectancy

Celebrities with Nemaline Myopathy

Celebrities with Nemaline Myopathy

1 answer
Is Nemaline Myopathy hereditary?

Is Nemaline Myopathy hereditary?

3 answers
Is Nemaline Myopathy contagious?

Is Nemaline Myopathy contagious?

3 answers
ICD9 and ICD10 codes of Nemaline Myopathy

ICD10 code of Nemaline Myopathy and ICD9 code

3 answers
Natural treatment of Nemaline Myopathy

Is there any natural treatment for Nemaline Myopathy?

1 answer
Living with Nemaline Myopathy

Living with Nemaline Myopathy. How to live with Nemaline Myopathy?

4 answers
Nemaline Myopathy diet

Nemaline Myopathy diet. Is there a diet which improves the quality of life ...

4 answers
History of Nemaline Myopathy

What is the history of Nemaline Myopathy?

2 answers

World map of Nemaline Myopathy

Find people with Nemaline Myopathy through the map. Connect with them and share experiences. Join the Nemaline Myopathy community.

Stories of Nemaline Myopathy

NEMALINE MYOPATHY STORIES
Nemaline Myopathy stories
Doctors had never seen a person with this disease before me. They said it was very rare. Eventually I found others online and we are a like family. The nemaline myopathy support group on Facebook is a great resource community.
Nemaline Myopathy stories
ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs Complicated labor-ischemic hypoxia autistic, failure to thrive used to walk 2 to 5 years declining :(
Nemaline Myopathy stories
Tenho 20 anos , descobri a Nemalínica com 3 anos de idade através de biópsia. Atualmente sou cadeiras e faço uso de ventilação mecânica nasal .
Nemaline Myopathy stories
I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended u...

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Nemaline Myopathy forum

NEMALINE MYOPATHY FORUM

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