Overview
Hypotrichosis simplex is a rare inherited condition that causes significant thinning and loss of hair across the scalp and sometimes the body. The word 'hypotrichosis' simply means having less hair than normal. Unlike many other hair loss conditions, hypotrichosis simplex is not caused by inflammation, scarring, or another underlying illness — the hair follicles themselves do not develop or function properly due to changes in certain genes. People with this condition are usually born with normal or near-normal hair, but noticeable hair thinning and loss begins in early childhood and gradually progresses over time. In some forms, hair loss is limited to the scalp, while in others it can also affect eyebrows, eyelashes, and body hair. Hypotrichosis simplex is sometimes called 'isolated hypotrichosis' because hair loss is the main or only feature — most people do not have other serious health problems linked to the condition. There are different subtypes depending on which gene is affected and how the condition is inherited. Some forms run in families in an autosomal dominant pattern (one changed copy of a gene is enough to cause the condition), while others follow an autosomal recessive pattern (two changed copies are needed). Currently, there is no cure for hypotrichosis simplex. Treatment focuses on managing the cosmetic and emotional impact of hair loss. Options include wigs, hairpieces, and general scalp care. Some people try medications used for other types of hair loss, such as minoxidil, though evidence for their effectiveness in this specific condition is limited. Psychological support and connecting with others who have the condition can be very helpful, especially for children and teenagers.
Also known as:
Key symptoms:
Progressive thinning of scalp hair starting in childhoodGradual loss of hair over the entire scalpReduced or absent eyebrowsReduced or absent eyelashesSparse or absent body hairHair that breaks easily or grows slowlyHair follicles that appear small or underdevelopedNo associated skin rashes or scarring on the scalpNormal nails and teeth (unlike some related syndromes)Normal overall health aside from hair loss
Clinical phenotype terms (6)— hover any for plain English
Variable
Can be inherited in different ways depending on the underlying gene
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Hypotrichosis simplex.
View clinical trials →Clinical Trials
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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 Hypotrichosis simplex.
Community
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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.Which gene is most likely responsible for my (or my child's) hair loss, and should I have genetic testing?,Will the hair loss get worse over time, and how quickly might that happen?,Are there any treatments — even experimental ones — that might slow the hair loss?,Should other family members be tested, and what are the chances of passing this on to my children?,Can you refer me to a psychologist or counselor who has experience with rare skin and hair conditions?,Are there any patient support groups or communities you would recommend?,What scalp care routine would you suggest to keep my scalp healthy as hair loss progresses?
Common questions about Hypotrichosis simplex
What is Hypotrichosis simplex?
Hypotrichosis simplex is a rare inherited condition that causes significant thinning and loss of hair across the scalp and sometimes the body. The word 'hypotrichosis' simply means having less hair than normal. Unlike many other hair loss conditions, hypotrichosis simplex is not caused by inflammation, scarring, or another underlying illness — the hair follicles themselves do not develop or function properly due to changes in certain genes. People with this condition are usually born with normal or near-normal hair, but noticeable hair thinning and loss begins in early childhood and gradually
At what age does Hypotrichosis simplex typically begin?
Typical onset of Hypotrichosis simplex is childhood. Age of onset can vary across affected individuals.
Which specialists treat Hypotrichosis simplex?
19 specialists and care centers treating Hypotrichosis simplex are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.