For family members of people with muscular dystrophy, coping with the illness involves major commitment of physical, emotional and financial resources. The disease presents challenges in the classroom, in the home and in all aspects of life.
In dealing with muscular dystrophy, support groups can be a valuable part of a wider network that includes health care professionals, family, friends and community organizations, including places of worship.
Support groups bring together people, family and friends who are all coping with the same kind of physical or mental health challenge. Support groups provide a setting in which people can share their common problems and provide ongoing support to one another.
Ask your doctor about self-help groups that may exist in your community. Your local health department, public library, telephone book and the Internet also may be good sources to locate a support group in your area.
Jan. 18, 2012
- Muscular dystrophy: Hope through research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/md/detail_md.htm. Accessed Nov. 2, 2011.
- Amato AA, et al. Muscular dystrophies and other muscle diseases: Hereditary myopathies. Longo DL, et al. Harrison's Online. 18th ed. New York, N.Y.: The McGraw-Hill Companies; 2012. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=4. Accessed Nov. 2, 2011.
- Chinnery PF. Muscle diseases: Muscular dystrophies. In: Goldman L, et al. Cecil Medicine. 24th ed. Philadelphia, Pa.: Saunders Elsevier; 2011. http://www.mdconsult.com/das/book/body/191371208-2/0/1492/0.html#. Accessed Nov. 2, 2011.
- Amato AA, et al. Disorders of skeletal muscle. In: Bradley WG, et al. Neurology in Clinical Practice. 5th ed. Philadelphia, Pa.: Butterworth-Heinemann Elsevier; 2008. http://www.mdconsult.com/books/about.do?about=true&eid=4-u1.0-B978-0-7506-7525-3..X5001-8--TOP&isbn=978-0-7506-7525-3&uniqId=230100505-57. Accessed Nov. 3, 2011.
- Darras BT. Patient information: Overview of muscular dystrophies. http://uptodate.com/home/index.html. Accessed Nov. 4, 2011.
- Kohler M, et al. Disability and survival in Duchenne muscular dystrophy. Journal of Neurology, Neurosurgery and Psychiatry. 2009;80:320.
- Ishikawa Y, et al. Duchenne muscular dystrophy: Survival by cardio-respiratory interventions. Neuromuscular Disorders. 2001;21:47.
- Harrison T. Muscular dystrophy. In: Ferri FF. Ferri's Clinical Advisor 2011: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2011. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-0-323-05610-6..C2009-0-38600-6--TOP&isbn=978-0-323-05610-6&about=true&uniqId=230100505-53. Accessed Nov. 4, 2011.
- Carter GT, et al. Aging with muscular dystrophy: Pathophysiology and clinical management. Physical Medicine & Rehabilitation Clinics of North America. 2010;21:429.
- Darras BT. Treatment of Duchenne and Becker muscular dystrophy. http://www.uptodate.com/home/index/html. Accessed Nov. 4, 2011.
- Borg K, et al. Myopathies. In: Frontera WR, et al. Essentials of Physical Medicine and Rehabilitation: Musculoskeletal Disorders, Pain, and Rehabilitation. 2nd ed. Philadelphia, Pa.: Saunders Elsevier; 2008. http://www.mdconsult.com/das/book/body/208746819-6/0/1678/0.html. Accessed Nov. 4, 2011.
- Darras BT, et al. Myotonic dystrophy: Prognosis and management. http://www.uptodate.com/home/index.html. Accessed Nov. 4, 2011.
- Bushby K, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: Diagnosis, and pharmacological and psychosocial management. The Lancet Neurology. 2010;1:77.
- Bushby K, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: Implementation of multidisciplinary care. The Lancet Neurology. 2010;2:177.
- Selcen D (expert opinion). Mayo Clinic, Rochester, Minn. Nov. 13, 2011.