What signs or symptoms may make you suspect you may have Nemaline Myopathy. People who have experience in Nemaline Myopathy offer advice of what things may make you suspicious and which doctor you should go to to receive treatment

▷ How do I know if I have Nemaline Myopathy?

Stories of Nemaline Myopathy

NEMALINE MYOPATHY STORIES

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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

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.

398

8/29/17, 9:09 AM by Greybeard

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 :(

389

8/29/17, 1:32 AM by Laura

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 .

327

7/20/17, 9:29 PM by Bruna

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...

How do I know if I have Nemaline Myopathy?