Millikenweb for Myotonic Dystrophy Information & Support

Myotonic (mi-o-ton-ik) Dystrophy (dih-strow-fee) type 1 (DM1) or (MyD), also known as myotonic muscular dystrophy (MMD), dystrophia myotonica (DM) or Steinert’s disease, is the most common type of adult muscular dystrophy affecting up to 1 in 8,000 individuals (in the United States approximately 40,000 people), with a world wide incidence of 1 affected individual in every 15 000. DM makes your muscles get weaker and smaller. Your muscles may also get very stiff as you use them. It then takes awhile for the muscles to relax. This is called myotonia (mi-o-to-nee-uh) and is common in the hands. It is a multisystem disorder that affects the skeletal and smooth muscles as well as the eyes, ears, heart, lungs, endocrine system, and central nervous system. Some of the symptoms could be muscle weakness, facial weakness, apnea, cataracts, Myotonic Muscular Dystrophy especially effects those muscles of the distal leg, hand, neck, and face, clubfeet, hypotonia, tissue wasting, developmental delay or mental retardation and poor sucking in newborns. Both men and women can get DM. People usually start to show symptoms of DM when they are 20 to 40 years old. But, it is possible for younger children to inherit congenital myotonic dystrophy (CDM). There is no cure for DM but the symptoms can be treated. The symptoms of DM get worse in each following generation because of the bad copies of genetic information. This means that you may pass on the bad genes to your children if you have DM. The more the bad genes are copied, the bigger the mistakes become. So your children will probably show symptoms of DM much earlier. And, their DM will be worse than yours. Genetic blood testing can tell you and your family whether or not your children may get DM.

The idea for starting this information & support web site for Myotonic Dystrophy came to me when my 13-month-old son was diagnosed with (DM1). After a year of doctors appointments and disappointments my wife and I where glad to finally get a diagnoses.
We now had something to work with, but the doctors gave us 20 pages of information photo copied from a technical reference book. Don't get me wrong, I like the doctor that made the diagnoses and the genetics counselor that spent over an hour answering questions, but hearing your son has a form of Muscular Dystrophy that may put him in a wheel chair, give him a heart attack, cause tissue wasting, mental retardation or worse, not much more sinks in.

As my wife will attest, I spent many sleepless hours searching the internet for information to the questions I had and still have, reading technical material from around the world, posting questions on other sites and signing guest books. I read lots of stories some even paralleled our own. I found a lot of information but none of the sites had all of what I was looking for.

I dedicate this web site to my wife and son who both are dealing with Myotonic Dystrophy on a daily basis. Millikenweb.com will attempt to be user friendly, have a good mixture of technical information translated into plain English with the compassion of a father and husband looking for the same. News of new treatments and current studies will be posted and updated on a regular basis. We will be working with Doctors, Educators, Counselors, and families not unlike your own to bring you information and support.

You will be able to have "private", public or "instant messages" with other members of our site. You can easily search other web sites we recommend or add some of the sites you find useful in our "Web Links" section. Read, comment or post information and "Polls" to our open "Forums" area. Get or post the latest news and developments to the "News" section. Millikenweb.com will be adding a lot of new information and items to the web site over the next few weeks. Join or extended family free and take advantage of the services we offer to all of our members. Buy, sell, trade or give away items in our "Classified ads" or "On-line Auctions" areas, both areas are great for fundraising. Share your own movies or pictures to the "Your Photo Albums" section. You have come this far, please take a moment to sign our "Guest Book".

I hope you find our site useful, let us know if we can help you in some way.

Thanks,
Jerry Milliken
Webmaster
Millikenweb.com for Myotonic Dystrophy support and information