Nemaline Myopathy Support Group

Introductions

Welcome

Welcome to the nemaline myopathy (NM) website, the first and most comprehensive resource for NM on the net. We hope that you will find support here whether you are the parent of a newly diagnosed child, a teenager with NM looking for peers to chat with, or an adult who has been living with NM for many years. We are a growing group of families and affected individuals who have learned to support and educate each other through the NM maze. Among us, we have a wealth of experience and knowledge of NM in all its forms. We are in close contact with all the world’s leading medical researchers for 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. We communicate via active Yahoo chat groups and Facebook pages. Please look around this site for links to other useful webs, and if you have any questions or info that may be of use to others, then please contact me at davidmcd_@hotmail.com. You can see my own webpage here. If posting messages online is not for you, then contact me privately and I can match you up with someone who can help asnswer your questions in English, French, Spanish, German, Italian, Portuguese, Norwegian, Finnish, Swedish, Dutch, Africaans, Chinese, Japanese, Romanian. I hold a large database of all the contacts I have come across since starting the NM website in 1999.

If you are a teenager or an adult with NM you will also find lots of support here. Some of our members have been living with NM for over 70 years! Again, we hope to be able to answer your questions and look forward to adding your experience to our pool of knowledge. Our adult members are the greatest support to our new parents, offering them the benefit of years of experience as well as the reassurance that many of them desperately need. We have NMers here with varying degrees of severity; some are ventilated, some use wheelchairs, some are starting families of their own. Whatever stage of life you find yourself at, you will find friends and understanding here.
To talk to parents of children with NM and affected adults and teenagers, join our lively chat groups. We have members around the world of all ages to 70+ years old.

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. We have been told to place DNR (do not resuscitate) orders or to turn off ventilators and yet, today, those same “hopeless” cases are starting school, fighting with their siblings and notching up birthdays. Fortunately many of us refused to listen when we were told that our kids would never walk or talk or that no amount of therapy would help a child with NM. The truth is that most doctors are not familiar with nemaline myopathy. NM is very rare and there can be quite a variation of symptoms 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. NM, especially the most severe form, is a serious and complex disorder. There is a lot to learn. As a new parent it is only natural to feel overwhelmed and scared by all the equipment and stress of raising a "medically fragile” child with constant needs. 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. People with NM are very smart; and have a higher than average IQ, are sociable and loving, and an asset to any family. Whilst at first we see all the differences, in time we come to realise that there are more similarities with other children. Yes the journey can be hard, but at times it is also exciting, exhilarating, profoundly moving and deeply fulfilling. Welcome to the world of special needs parenting. You will see that there is a huge amount to learn; therapies, equipment, medical information, and human biology. Try not to feel overwhelmed, one step at a time you will become familiar with all the terminology and concepts. We have learned and proved that WE are the real experts on this subject. As a group we have more experience and know-how than even the leading doctors in the field, and our children are living proof that the medics don’t always know best.
There are also foundations and a social support fund who are always needing funds for their respective projects.

Adult Onset NM, or Sporadic Late Onset Nemaline Myopathy to give it its scientific name, is far more rare than NM, and is considered by researchers as a different disorder. There is a separate chat group for SLONM. A brief web page is here.

Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
Learn more »»

Other languages

Nemaline myopathy(NM) is also known as: nemaline rod myopathy, rod myopathy, congenital rod myopathy, congenital rod disease, congenital myopathy, congenital nemaline myopathy
In other languages it is: nemaline myopathie, miopatía nemalina(Spanish)
Adult onset NM is also known as sporadic late onset nemaline myopathy(SLONM)