What are the best treatments for Nemaline Myopathy?

Treatments for Nemaline Myopathy: what real patients say works for them, alongside a medically reviewed overview citing sources like NIH GARD and Orphanet.

4 answers

There are currently no treatments for Nemaline Myopathy.

Posted Feb 24, 2017 by Star 1270

There are no treatments for NM. Families, individuals affected, and other concerned people are encouraged to support A Foundation Building Strength for Nemaline Myopathy, the only non-profit organization dedicated to finding a treatment for NM.

Posted Aug 28, 2017 by Stacy 500

Physical therapy, occupational therapy, speech/feeding therapy. Nebulizer treatments, smart vest or percussion, cough assist and auction machine.

Posted Aug 29, 2017 by Mary Jo Draisma 2100

Translated from portuguese Improve translation

physical therapy gross motor and respiratory, and treatment with cells stem

Posted May 29, 2017 by Danielle 1150

Nemaline Myopathy treatments

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Stories of Nemaline Myopathy

NEMALINE MYOPATHY STORIES

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NEEDLE IN A HAYSTACK

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.

659

8/29/17, 9:09 AM by Greybeard

OUR FOURTH DAUGHTER BORN STARTED TO FAIL AT ABOUT TWO WEAKS THAT WE NOTICED. FIRST WEIGHT LOSS THEN JUST PHYSICALLY WEAKER BY THE MINUTE. UNABLE TO SUCK SWALLOW AND BREATH. THROUGH TESTING AND DIAGNOSIS WE HAVE LEARNED SHE HAS A NEW MUTATION. MUSCLE BIOP

Same as above

644

8/29/17, 12:33 AM by Mary Jo Draisma

IT'S BEEN A LONG ROAD

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...

556

8/29/17, 9:16 AM by Peter

NEMALINE MYOPATHY

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 :(

554

8/29/17, 1:32 AM by Laura

OUR STORY

Our journey started in 2010 with our first born son and also first born nmer he passed away at 12 days old then our second born son in 2011 also born with nm he passed away at 12 weeks and in 2016 our third born son was also born with nm and its been...

485

8/30/17, 5:27 PM by Laura

What are the best treatments for Nemaline Myopathy?

Treatments for Nemaline Myopathy: what real patients say works for them, alongside a medically reviewed overview citing sources like NIH GARD and Orphanet.

Nemaline Myopathy treatments

What is the life expectancy of someone with Nemaline Myopathy?

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Celebrities with Nemaline Myopathy

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Is Nemaline Myopathy hereditary?

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Is Nemaline Myopathy contagious?

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ICD10 code of Nemaline Myopathy and ICD9 code

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Is there any natural treatment for Nemaline Myopathy?

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

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

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