Ask the Expert

Growth and Nutrition Experts’s Bio Image

Get answers to your child's growth, nutrition, and feeding behavior questions.

Growth and Nutrition Experts’s Bio | Q&A Archive

Note: This is for informational purposes only. Doctors cannot provide a diagnosis or individual treatment advice via e-mail. Please consult your physician about your specific health care concerns.

Please install flash player to see this video.

Hurler syndrome - Treatment

Alternative Names

Alpha-L-iduronate deficiency; Mucopolysaccharidosis type I; MPS I H

Treatment:

Enzyme replacement therapy helps the body make alpha-L-iduronidase.

A bone marrow transplant can improve some of the symptoms of the disease. To prevent mental retardation, a bone marrow transplant probably should be done at a very young age.

Other treatments depend on the organs that are affected.

Support Groups:

For more information and support, contact one of the following organizations:

The National MPS Society -- www.mpssociety.org
Canadian Society for MPS and Related Diseases -- www.mpssociety.ca
Society for MPS Diseases -- www.mpssociety.co.uk

Expectations (prognosis):

Hurler syndrome is a disease with a poor outlook. Children with this disease develop nervous system problems, and can die young.

Calling your health care provider:

Call your health care provider if you have a family history of Hurler syndrome and are considering having children, or if your child begins to show symptoms of Hurler syndrome.

Low nasal bridge

Reviewed last on: 5/22/2007
Brian Kirmse, M.D., Department of Human Genetics, Mount Sinai School of Medicine, New York, NY. Review provided by VeriMed Healthcare Network.

References

Staba SL, Escolar ML, Poe M, et al. Cord-blood transplants from unrelated donors in patients with Hurler's syndrome. N Engl J Med. 2004 May 6;350(19):1960-9.

National Institute of Neurological Disorders and Stroke. Mucolipidoses Fact Sheet. Office of Communications and Public Liaison. Bethesda, MD; Publication No. 03-5115. February 13, 2007.

The information provided herein should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed medical professional should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Links to other sites are provided for information only -- they do not constitute endorsements of those other sites. © 1997- A.D.A.M., Inc. Any duplication or distribution of the information contained herein is strictly prohibited.

Home > Medical Reference > Encyclopedia (English)