Newly Diagnosed with Myotonic Dystrophy
If you are looking at this site, you or one of your family members has likely recently received a diagnosis of myotonic dystrophy (DM). This news can be overwhelming, and it may take some time for you and your family to adjust.
We at MDF all have personal experience of living with myotonic dystrophy and know how difficult this time can be. It is our hope that this site will be able to help you navigate the path of myotonic dystrophy. Our goal is to provide you with accurate information about DM and share the experience of remarkable people who have this disease.
Note: Medical information available on this site is designed as general information only. Patients should consult with a physician or other qualified medical proessionals for advice on medical treatment.
Myotonic Dystrophy Basics
Myotonic dystrophy is one of the most complicated diseases known. The symptoms and prognosis vary greatly between individuals, even in the same family. One individual might experience nothing more than mild muscle pain or cataracts in old age. Another may have life-threatening breathing issues at birth. It is difficult to predict just how the disease will affect you and your family.
While there is no cure for myotonic dystrophy, managing your symptoms can greatly improve your quality of life and avoid complications that can arise, such as during surgery, pregnancy or any use of anesthesia.
It is a hopeful time in the history of understanding this disease; remarkable medical advances are occurring every day. Knowledge about the disease and how it can be treated is advancing rapidly. It is important to keep continually updated because being informed means you will be able to participate in your care more actively and manage your symptoms more effectively. It is also extremely important for you to assume responsibility for educating and advocating for yourself. Because myotonic dystrophy is a rare disease, you will need to be able to communicate with doctors who often know less than you about your disease.
The links below provide you with information to get started: