Doctors trained in nervous system conditions (neurologists) and other areas coordinate your treatment. Doctors work with you to determine the most appropriate treatment for your needs.
Metachromatic leukodystrophy can't be cured, and few treatment options are available. Your doctors will work with you to help manage your signs and symptoms and potentially improve your quality of life. You may have access to clinical trials.
Your doctor may help you manage your condition using several treatments:
Feb. 13, 2014
- Medications. Medications may reduce your signs and symptoms and relieve your pain.
- Bone marrow transplant. Bone marrow transplant sometimes has slowed the progression of metachromatic leukodystrophy.
Physical, occupational and speech therapy. You may have physical therapy to move your muscles and joints, to keep joints flexible and maintain your range of motion as much as possible. You may need a wheelchair, walker or other assistive devices as your condition progresses.
You may have occupational and speech therapy to improve your quality of life.
Nutritional assistance. You and your family may work with a nutrition specialist (dietitian) to determine how to provide your diet, as it may become difficult to swallow food or liquid.
You may need assistive feeding devices as your condition progresses.
Follow-up care. Doctors will coordinate your follow-up care with your primary doctor. In follow-up care, doctors will monitor you for changes in movement, swallowing, communication, behavior and other functions. Doctors will also provide comprehensive care and treat any other medical conditions.
Mayo Clinic staff offers various resources, education and information for your family and can help connect you to support groups. You and your family may also work with a genetic counselor.
- NINDS metachromatic leukodystrophy information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/metachromatic_leukodystrophy/metachromatic_leukodystrophy.htm. Accessed Aug. 14, 2013.
- Cruse RP. Metachromatic leukodystrophy. http://www.uptodate.com/home. Accessed Aug. 14, 2013.
- Biffi A, et al. Metachromatic leukodystrophy: An overview of current and prospective treatments. Bone Marrow Transplantation. 2008;42:S2.
- Pagon RA, et al., eds. GeneReviews. Seattle, Wash.: University of Washington; 2006. http://www.ncbi.nlm.nih.gov/books/NBK1130/. Accessed Aug. 19, 2013.
- Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed Aug. 20, 2013.
- Cook AJ. Decision Support System. Mayo Clinic, Rochester, Minn. Aug. 2, 2013.