Overview
Acquired kinky hair syndrome is a rare condition where the hair becomes abnormally twisted, brittle, and kinky — not because of genetics, but because of a deficiency in copper in the body. Unlike the inherited form of kinky hair disease (known as Menkes disease), this acquired version develops after birth due to low copper levels caused by an outside factor, such as poor nutrition, problems absorbing nutrients, or certain medical treatments. Copper is an essential mineral that the body needs to build strong, healthy hair, among many other functions. The most common cause is copper deficiency, which can happen in premature babies receiving intravenous nutrition without enough copper, or in people who have had certain bowel surgeries that reduce nutrient absorption. The hair changes are often the most visible sign, but low copper can also affect the nervous system, bones, and blood. Treatment focuses on correcting the copper deficiency, usually through copper supplements given by mouth or through a vein. When caught early and treated properly, many of the symptoms can improve or even reverse. Regular monitoring by a specialist is important to make sure copper levels return to normal and stay there.
Key symptoms:
Kinky, twisted, or unusually brittle hairHair that breaks easilyPale or washed-out skin color (pallor)Anemia (low red blood cell count causing tiredness and weakness)Bone problems or fracturesNerve damage causing numbness or weakness in the limbsPoor growth or failure to thrive in infantsLow energy and fatigueDifficulty walking or poor coordination
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Acquired kinky hair syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Acquired kinky hair syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Acquired kinky hair syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Acquired kinky hair syndrome.
Community
No community posts yet. Be the first to share your experience with Acquired kinky hair syndrome.
Start the conversation →Latest news about Acquired kinky hair syndrome
No recent news articles for Acquired kinky hair syndrome.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is causing my copper deficiency, and how do we fix the root cause?,How long will I need to take copper supplements, and how will we know when levels are back to normal?,Will my hair and other symptoms fully recover, or could some damage be permanent?,Do I need to make any changes to my diet to prevent this from happening again?,How often should I have blood tests to monitor my copper levels?,Are there any risks or side effects from taking copper supplements?,Should other family members be tested, or is this condition not inherited?
Common questions about Acquired kinky hair syndrome
What is Acquired kinky hair syndrome?
Acquired kinky hair syndrome is a rare condition where the hair becomes abnormally twisted, brittle, and kinky — not because of genetics, but because of a deficiency in copper in the body. Unlike the inherited form of kinky hair disease (known as Menkes disease), this acquired version develops after birth due to low copper levels caused by an outside factor, such as poor nutrition, problems absorbing nutrients, or certain medical treatments. Copper is an essential mineral that the body needs to build strong, healthy hair, among many other functions. The most common cause is copper deficiency,
How is Acquired kinky hair syndrome inherited?
Acquired kinky hair syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.