Myotonic Muscular Dystrophy
- Introduction
- 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/therapies/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)?
Introduction
What is myotonic muscular dystrophy and what causes it?
- cataracts
- heart arrhythmias
- learning problems
- frontal balding
- diabetes
What are the symptoms of MMD?
- breathing problems
- high arched palate
- difficulty eating
- muscle contractures
- distinctive facial features due to facial muscle weakness
- myotonia which is present in older children and adults is not present in infants, although often it is possible to find myotonia in the infant's mother
- muscle weakness, especially face, neck, hands, giving the face a distinctive appearance
- muscle contractures, especially heel cords
- myotonia
- frontal balding
- diabetes
- heart arrhythmias
What is the prognosis?
What is the risk for other family members or future babies?
What treatments/therapies/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)?
Resources
Information & Support
For Parents and Patients
Support
Myotonic Dystrophy Support Group (MDSG)
This support organization offers information about myotonic dystrophy, events, research, and more.
General
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 and patient; Muscular Dystrophy Association.
Myotonic Dystrophy Foundation
A non-profit that provides adaptive equipment and emotional support to individuals and families affected by any of the neuromuscular
diseases.
Muscular Dystrophy Association
A nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding worldwide research.
Services in New Mexico
Adolescent Health Transition Programs
We currently have no Adolescent Health Transition Programs service providers listed; search our Services database for related services.
Developmental - Behavioral Pediatrics
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Developmental Pediatrics
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Early Childhood Education/Preschool
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Early Intervention for Children with Disabilities/Delays
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Muscular Dystrophy Clinics
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Neuropsychiatry/Neuropsychology
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Nutrition Assessment Services
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Occupational Therapy, Pediatric
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Pediatric Gastroenterology
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Pediatric Genetics
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Pediatric Otolaryngology
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Pediatric Physical Medicine & Rehabilitation
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Pediatric Sleep Medicine
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Psychiatrist, Child-18 (MD)
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Respiratory Therapy
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Sleep Studies/Polysomnography
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Speech - Language Pathologists
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For other services related to this condition, browse our Services categories or search our database.
Studies
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.