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