- What is myotonic muscular dystrophy and what causes it?
- What are the symptoms of MMD?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/theapies/medications are recommended or available?
- My son has been found to have myotonic dystrophy, and he is having a lot of learning problems at school. Could this be related, and should I tell the school?
- What is the difference between myotonic muscular dystrophy and muscular dystrophy?
- When my child has a surgery, is anesthesia a risk?
- Why does my child take so many naps and have to rest after just a few minutes at the playground?
- My son is 10 years old and still drooling. Why is this and is there anything we can do to stop it?
- Who gets myotonic muscular dystrophy (MMD)?
- heart arrhthymias
- learning problems
- frontal balding
Myotonic muscular dystrophy is an inherited condition. This condition follows a 'dominant' inheritance pattern, which means that on average half of the children of an affected person are themselves affected. Both men and women are equally likely to be affected and to pass on the disorder, but affected women are more likely to have a severely affected child. If the disease is inherited through the mom, the disorder tends to be more severe in successive generations.
- breathing problems
- high arched palate
- difficulty eating
- muscle contractures
- distinctive facial features due to facial muscle weakenss
- myotonia which is present in older children and adults is not present in infants, although often it is possible to find myotonia in the infants mother
- muscle weakness, especially face, neck, hands, giving the face a distinctive appearance
- muscle contractures, especially heel cords
- frontal balding
- heart arrhthymias
My son has been found to have myotonic dystrophy, and he is having a lot of learning problems at school. Could this be related, and should I tell the school?
Myotonic Dystrophy Support Group (MDSG)
This support organization offers information about myotonic dystrophy, events, research, and more.
Myotonic Dystrophy (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Facts about Myotonic Muscular Dystrophy (MDA)
Excellent overview of myotonic muscular dystrophy written for the family/patient; Muscular Dystrophy Association.
Myotonic Dystrophy Foundation
A nonprofit foundation that provides adaptive equipment and emotional support to individuals and families affected by any one of 40 neuromuscular diseases.
Muscular Dystrophy Association
A nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding worldwide research.
Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. Includes health supervision and management guidelines, and other useful resources; a collaboration among the Health Resources & Services Administration, the Maternal & Child Health Bureau, and the American Academy of Pediatrics.
See all Behavioral Pediatrics services providers (5) in our database.
See all Developmental Pediatrics services providers (3) in our database.
See all Early Intervention Programs services providers (40) in our database.
See all Health Insurance/Funding, Transition services providers (44) in our database.
See all Muscular Dystrophy Clinics services providers (1) in our database.
See all Neuropsychology services providers (37) in our database.
See all Nutrition/Dietary services providers (52) in our database.
See all Occupational Therapy services providers (40) in our database.
See all Pediatric Cardiology services providers (3) in our database.
See all Pediatric Dentistry services providers (44) in our database.
See all Pediatric Gastroenterology services providers (3) in our database.
See all Pediatric Genetics services providers (3) in our database.
See all Pediatric Neurology services providers (7) in our database.
See all Pediatric Ophthalmology services providers (8) in our database.
See all Pediatric Orthopedics services providers (15) in our database.
See all Pediatric Otolaryngology services providers (9) in our database.
See all Pediatric Physical Medicine & Rehab services providers (5) in our database.
See all Pediatric Pulmonology services providers (4) in our database.
See all Pediatric Sleep Medicine services providers (3) in our database.
See all Physical Therapy services providers (58) in our database.
See all Preschool/Early Childhood Education services providers (45) in our database.
See all Psychiatrist, Child-18 services providers (26) in our database.
See all Respiratory Therapy services providers (9) in our database.
See all School Districts services providers (50) in our database.
See all Sleep Studies/Polysomnography services providers (8) in our database.
See all Speech/Language Therapy services providers (69) in our database.
See all Swallow Studies services providers (1) in our database.
For other services related to this condition, browse our Services categories or search our database.
Myotonic Dystrophy Foundation Family Registry (PatientCrossroads)
Connects patients to researchers and allows patients to compare their symptoms with those of other patients.
National Registry of Myotonic Dystrophy Patients (University of Rochester)
Accelerates research in myotonic dystrophy and FSH dystrophy by connecting patients with researchers, collecting longitudinal data to track disease progression, and disseminating information to families, researchers, and care providers.
|Author:||Lynne M Kerr, MD, PhD - 3/2012|
|Compiled and edited by:||URLEND Trainees, 2011-2012 - 3/2012|
|Content Last Updated:||10/2015|