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19

Is it easy to find a partner and/or maintain relationship when you have Nemaline Myopathy?

Relationships and Nemaline Myopathy: real patients share how diagnosis affected dating and partnership.

Couple and Nemaline Myopathy
1 answer
I would say it's difficult or impossible with someone who is severely affected. Ones partner would need to be very accommodating and help with many things that take strength. Although the person with a Nemaline is usually very bright/gifted it's hard to get through a normal day due to fatigue.
Posted Aug 29, 2017 by Mary Jo Draisma 2100

Couple and Nemaline Myopathy

Nemaline Myopathy life expectancy

What is the life expectancy of someone with Nemaline Myopathy?

4 answers
Celebrities with Nemaline Myopathy

Celebrities with Nemaline Myopathy

1 answer
Is Nemaline Myopathy hereditary?

Is Nemaline Myopathy hereditary?

2 answers
Is Nemaline Myopathy contagious?

Is Nemaline Myopathy contagious?

2 answers
ICD9 and ICD10 codes of Nemaline Myopathy

ICD10 code of Nemaline Myopathy and ICD9 code

2 answers
Natural treatment of Nemaline Myopathy

Is there any natural treatment for Nemaline Myopathy?

2 answers
Nemaline Myopathy diet

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

4 answers
Living with Nemaline Myopathy

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

4 answers

World map of Nemaline Myopathy

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Stories of Nemaline Myopathy

NEMALINE MYOPATHY STORIES
Nemaline Myopathy stories
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.
Nemaline Myopathy stories
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
Nemaline Myopathy stories
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...
Nemaline Myopathy stories
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 :(
Nemaline Myopathy stories
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...

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Nemaline Myopathy forum

NEMALINE MYOPATHY FORUM

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