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  Menkes Disease 
  
Reviewed  07-01-2001  

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What is Menkes Disease?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations
Related NINDS Publications and Information

What is Menkes Disease?
Menkes disease is a genetic neurodegenerative disorder of copper metabolism. It is characterized by seizures, psychomotor deterioration, failure to thrive, temperature instability (hypothermia), and strikingly peculiar hair. Copper is deficient in most tissues of Menkes disease patients, causing structural changes in the hair, brain, bones, liver, and arteries. The characteristic kinky hair is stubby, tangled, sparse, or steely and is easily broken. It is often white, ivory, or gray in color. Brain abnormalities such as atrophy, subdural hematoma, and/or rupture or thrombosis of arteries in the brain may occur. Weakened bones (osteoporosis) may result in fractures. Because it is an X-linked genetic trait, Menkes disease primarily affects males. Affected infants may be born prematurely. In some cases, normal or slightly slowed development may proceed for 2 to 3 months. At approximately three months of age, severe, developmental delay, loss of early development skills, and convulsions typically occur.

Is there any treatment?
Early treatment with intravenous or oral copper supplements may be of some benefit. Other treatment is symptomatic and supportive.

What is the prognosis?
The prognosis for individuals with Menkes disease is poor. Most affected persons die within the first decade of life.

What research is being done?
The NINDS supports research on genetic neurodegenerative disorders such as Menkes disease. The goals of this research are to increase scientific understanding of these disorders and to find ways to prevent, treat, and cure them.

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

 Organizations

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291

National Institute of Child Health and Human Development (NICHD)
National Institutes of Health
Bldg. 31, Rm. 2A32
Bethesda, MD 20892-2425
NICHDClearinghouse@mail.nih.gov
http://www.nichd.nih.gov
Tel: 301-496-5133 800-370-2943

Related NINDS Publications and Information

  • Patients with Menkes Disease Sought for Study

  • Lay-language descriptions of new program announcements and clinical trials seeking patient volunteers.


    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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