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Myotonic muscular dystrophy type 1 - Services & Other Resources

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Information & Support

For Parents and Patients

Facts about myotonic muscular dystrophy (MDA)
Excellent overview of myotonic muscular dystrophy written for the family/patient, on the Muscular Dystrophy Association site (www.mdusa.org).

Myotonic dystrophy (Genetics Home Reference)
Information for patients/families from Genetics Home Reference, sponsored by the National Library of Medicine

Support

Muscular Dystrophy Association

Myotonic Dystrophy Foundation

For Professionals

MMD (Genome.gov)

Myotonic dystrophy 1 (GeneReviews)

Myotonic muscular dystrophy (OMIM)
From the Online Mendelian Inheritance in Man site, hosted by Johns Hopkins University, providing technical information for providers on genetic disorders, links to MEDLINE, and links to other scientific information and sites.

Tools

Bowel management (general) (PDF Document 74 KB)
General information on bowel function and management of constipation for families and providers.

Bowel management algorithm (PDF Document 47 KB)
Algorithm for management of chronic constipation developed in collaboration with pediatric gastroenterology.

Constipation evaluation tool (PDF Document 84 KB)
Provides a format for evaluation of chronic constipation in children.

Home toileting record (PDF Document 49 KB)
An easy-to-use form for keeping track of a child's toileting habits.

Services

Developmental Pediatrics

See all Developmental Pediatrics services providers (2) in our database.

Early Intervention Programs

See all Early Intervention Programs services providers (36) in our database.

General Dentistry for CSHCN

See all General Dentistry for CSHCN services providers (120) in our database.

Muscular Dystrophy Clinics

See all Muscular Dystrophy Clinics services providers (1) in our database.

Neuropsychology

See all Neuropsychology services providers (5) in our database.

Nutrition/Dietary

See all Nutrition/Dietary services providers (46) in our database.

Occupational Therapy

See all Occupational Therapy services providers (27) in our database.

Pediatric Cardiology

See all Pediatric Cardiology services providers (2) in our database.

Pediatric Dentistry

See all Pediatric Dentistry services providers (17) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (2) in our database.

Pediatric Medical Genetics

See all Pediatric Medical Genetics services providers (3) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (3) in our database.

Pediatric Ophthalmology

See all Pediatric Ophthalmology services providers (5) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (2) in our database.

Pediatric Otolaryngology

See all Pediatric Otolaryngology services providers (9) in our database.

Pediatric Physical Medicine & Rehab

See all Pediatric Physical Medicine & Rehab services providers (6) in our database.

Pediatric Sleep Medicine

See all Pediatric Sleep Medicine services providers (3) in our database.

Physical Therapy

See all Physical Therapy services providers (31) in our database.

Preschool/Early Childhood Education

See all Preschool/Early Childhood Education services providers (28) in our database.

School Districts

See all School Districts services providers (19) in our database.

Speech/Language Therapy

See all Speech/Language Therapy services providers (35) in our database.

For other services related to this condition, browse our Services categories or search our database.