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  Niemann-Pick Disease 
  
Reviewed  5-27-2003  

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What is Niemann-Pick disease?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Niemann-Pick disease?
Niemann-Pick disease (NP) is an inherited metabolic disorder in which harmful quantities of a fatty substance accumulate in the spleen, liver, lungs, bone marrow, and, in some people, the brain. The disease is subdivided into 4 related types. In types A and B, insufficient activity of an enzyme called sphingomyelinase causes the build up of toxic amounts of sphingomyelin, a fatty substance present in every cell of the body. Types C and D are characterized by a defect that disrupts the transport of cholesterol between brain cells. Type A, Infantile NP is the most common type, and occurs in infants. It is characterized by jaundice, enlargement of the liver, and profound brain damage. Children with this type rarely live beyond 18 months. Type B, Juvenile Nonneuronopathic NP, involves enlargement of the liver and spleen, which characteristically occurs in the pre-teen years. The brain is not affected. Types C and D may appear early in life or be delayed into the teen years. Children with these types have only moderate enlargement of the spleen and liver, but brain damage may be extensive and cause an inability to look up and down, difficulty in walking and swallowing, and progressive loss of vision and hearing. Type D only occurs in people with an ancestral background in Nova Scotia.

Is there any treatment?
There is currently no effective treatment for patients with type A. Bone marrow transplantation has been attempted in a few patients with type B, and encouraging results have been reported. The development of enzyme replacement and gene therapies might also be helpful for those with type B. Children and young teens with types C and D are frequently placed on a low-cholesterol diet, but its clinical benefit is not convincing.

What is the prognosis?
Patients with type A die in infancy. Type B patients may live a comparatively long time, but many require supplemental oxygen because of lung impairment. The life expectancies of patients with types C and D are variable. Some patients die in childhood while others, who appear to be less drastically affected, live into adulthood.

What research is being done?
Investigators at NINDS have identified two different genes that, when defective, contribute to Niemann-Pick disease, types C and D. Research supported by the NINDS also includes studies to understand how genetic defects can cause neurological disorders. These studies open promising new avenues for the development of successful treatments.

Select this link to view a list of studies currently seeking patients.

 Organizations

Ara Parseghian Medical Research Foundation [For Niemann-Pick Type C Disease]
3530 East Campo Abierto Rd.
Suite 105
Tucson, AZ 85718
victory@parseghian.org
http://www.parseghian.org
Tel: 520-577-5106
Fax: 520-577-5212

National Niemann-Pick Disease Foundation, Inc.
P.O. Box 49
Ft. Atkinson, WI 53538
nnpdf@idcnet.com
http://www.nnpdf.org
Tel: 920-563-0930 877-CURE-NPC (287-3672)
Fax: 920-563-0931

National Tay-Sachs and Allied Diseases Association
2001 Beacon Street
Suite 204
Boston, MA 02135
info@ntsad.org
http://www.ntsad.org
Tel: 617-277-4463 800-90-NTSAD (906-8723)
Fax: 617-277-0134

Jim Lambright Niemann-Pick Foundation
22831 61st Ave. SE
Suite B
Woodinville, WA 98072-8674
help@lambrightfoundation.org
http://www.lambrightfoundation.org
Tel: 425-486-5303
Fax: 425-486-5373


NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.


Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892




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