What are the congenital myopathies?

The congenital myopathies are a group of rare muscle disorders. They are similar in nature and generally present with mild to moderate muscle weakness in infancy or early childhood. There are differences between the specific myopathies as well as variations within the same myopathy.

Why a web site?

I am the mother of a ten year old son with a myopathy. When we received his diagnosis, my husband and I were able to find very little about his condition. Over the years, I've learned a great deal and I would like to share this with others who might be searching for information and resources. This site is in no way exhaustive, and I am by no means an expert on the subject. I simply hope this site will help others--people with myopathies and those who care about them. I remember too well my feelings at the time of my son's diagnosis, and I hope I can help someone else.