Among us, we have a wealth of experience and knowledge of NM in all its degrees, we are in close contact with all the world's leading medical researchers into this subject and have tried a multitude of therapies and approaches to dealing with this disorder. We will do our best to answer your questions as well as drawing on your experiences as we endeavour to build a comprehensive picture of nemaline myopathy. If you are the parent of a newly diagnosed child, you may have been given a very bleak prognosis. Too many of us have also had doctors writing off our children. The truth is that most doctors are not familiar with nemaline myopathy.
NM is very rare and there is a HUGE variation from person to person.
It is simply not possible for them to give an accurate prognosis. We have learned to take the doom-mongering with a pinch of salt, and so will you. This is not to say that it is an easy journey. We have all felt lost and alone in this at times and grieving and sadness is a part of the process. But there are many rewards too and, as parents, we have also come to see what an incredible gift these children are.