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The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
Menkes disease
Menkes kinky-hair syndrome
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Overview
Menkes disease is a disorder that affects copper levels in the body. It is characterized by sparse, kinky hair; failure to thrive; and deterioration of the nervous system. Additional signs and symptoms may be noted. Children with Menkes syndrome typically begin to develop symptoms during infancy and often do not live past age 3. Menkes disease is caused by mutations in the ATP7A gene. It is inherited in an X-linked recessive pattern. Early treatment with copper may improve the prognosis in some affected individuals. In rare cases, symptoms begin later in childhood. Source: Genetic and Rare Diseases Information Center (GARD), supported by ORDR-NCATS and NHGRI.
Trusted Medical Sites
Genetic & Rare Diseases Information Center (GARD)
GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
Support Organizations
Support organizations can provide help and guidance in areas such as peer matching, education and training, and therapy and counseling.
Disease Resources
Resources can help guide your quest for factual and reliable information.
VHL Alliance Newsletter
The newsletter is designed to educate and empower patients and all those impacted by VHL. It is a critical piece of VHLA’s educational and support efforts.
VHL Alliance Blog
There are no true rules for the VHL journey. It is different for everyone. VHL impacts everyone, the VHLer and those who love the VHLer. Read how others are living through and thriving during their journey.
The VHL Handbook: What You Need to Know About VHL
A reference handbook patients, caregivers and healthcare providers; it explains how VHL occurs, how to monitor and test for possible medical issues, and common treatment options to consider.
MdDS Friends Support Group on Facebook
Please join over 3700 people living with Mal deDebarquement Syndrome for support and conversation.
Understanding Mal de Debarquement Syndrome (MdDS)
Resource for people living with MdDS and those who support them including medical professionals can be found here.