Is it easy to find a partner and/or maintain relationship when you have Nemaline Myopathy?
People with experience in Nemaline Myopathy give their opinion on whether it is easy or not to have a partner or to maintain a realationship when you are diagnosed of Nemaline Myopathy. What are the possible difficulties in having a relationship?
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.
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...