If you are visiting us for the first time you have probably heard the following:
These statements are all false.
Hello! We're glad you found us!
Myotubular Myopathy (also called Centronuclear Myopathy) is a family of rare, inherited diseases. Manifesting itself as a defect in the cell structure of voluntary muscles, it causes low muscle tone and, in most forms, is usually apparent at birth. Affected children have diminished respiratory capacity and are often partially or totally ventilator dependent.
Despite this, the disease can be managed so that people with this disorder grow, thrive and enjoy life. It happens all the time.
This web site contains information about this disease. It also contains information about the three forms of myotubular myopathy, x-linked, autosomal recessive and autosomal dominant. Also, please note that most of the information on this site relates to affected children, not adults. This is because most of our experience is with children and the versions of this disease that present itself at birth or very early childhood. There is a version of this disease that begins its onset in late adelescence or early adulthood. We have talked with some families affected in this way and can provide some information and some contacts.
If you would like additional information or are aware of affected families interested in our efforts please contact us. Our e-mail address is email@example.com
If you read nothing else on this site, please read the stories of affected families. These experiences describe living (or not living) with this disorder better than anything else we can present here. Also, if this is your first time here, you probably have a lot of unanswered questions. You might start with the page of Frequently Asked Questions (FAQs) about Myotubular Myopathy.
Thanks for visiting us.
Visits from 24 January 2000 through 3 March 2001: 5510
Visits Since 03 March 2001: