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We have compiled information about Myotubular Myopathy from a variety of sources. In addition to the material on this page we think that the stories of affected families is very useful. 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. Articles on Myotubular Myopathy When we started all of this, we couldn't find a good, current summary of MTM and all of its forms. So we did a little research and wrote one. Shortly thereafter, Dr. Gail Herman was kind enough to write another one for us. Recently, Candice Roman, a student at James Madison University, wrote a wonderful paper on the subject and on how it had impacted her family. These links will take you to these articles...
The Muscular Dystrophy Association, in its magazine, Quest, has just published a wonderful article about Myotubular Myopathy and the Resource Group. This is a must read for anyone interested in this subject. The online version of this article is available here. Photos of What Affected Cells Look Like In their on-line data base of neuromuscular diseases,
Washington University in St. Louis has posted photos showing the difference between muscle
cells affected by MTM and unaffected cells. Click here to go
to the site. Various news items, tips and other things we've picked up along the way. This is where we put all of the news items that we didn't have a better place for. Some suggestions on how to manage Myotubular Myopathy. This is where we have tried to capture the collective wisdom of some of the families who have been dealing with MTM over the past years. As affected kids begin to grow, spinal curvature, or scoliosis, begins to become a problem. Often a serious one. This page gives some information and experiences on dealing with scoliosis. Some information about our resource group. Some statistics on affected patients that we've pulled together. Financial Planning Families with disabled members have a different set of financial concerns than most. This is especially true where disabled children are involved. Some recent changes to the Social Security make it important that financial planning be done right. MetLife has a prgram called MetDESK that provides guidance on this. For more information, consult the MetLife web site at www.metlife.com. (Disclaimer: The Myotubular Myopathy Resource Group does not endorse this site nor do we provide any claims as to the suitability of advice given at that site. Other than the fact that they provide Group Dental Insurance for Gary's employer we have no financial relationship with MetLife.)
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