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

Living with Nemaline Myopathy: how patients cope day to day and stay positive - real experiences and practical tips.

3 answers

You may require a carer to help you throughout your life, but it very possible to live a happy life with Nemaline Myopathy.

Posted Feb 24, 2017 by Star 1270

Live as normal as possible but treat the symptoms of the disease. Some live life along side of their peers with less problems and some are very limited in living like their peers. But happy is always possible and have high exaowctations. Don't give up

Posted Aug 29, 2017 by Mary Jo Draisma 2100

Translated from portuguese Improve translation

yes, absolutely, doing all of that if you like

Posted May 29, 2017 by Danielle 1150

Living with Nemaline Myopathy

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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.

611

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

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8/29/17, 12:33 AM by Mary Jo Draisma

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 :(

515

8/29/17, 1:32 AM by Laura

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...

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8/29/17, 9:16 AM by Peter

BRUNA'S STORY

Tenho 20 anos , descobri a Nemalínica com 3 anos de idade através de biópsia. Atualmente sou cadeiras e faço uso de ventilação mecânica nasal .

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7/20/17, 9:29 PM by Bruna

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

Living with Nemaline Myopathy: how patients cope day to day and stay positive - real experiences and practical tips.

Living with Nemaline Myopathy

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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What is the history of Nemaline Myopathy?

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