Living with Frontal fibrosing alopecia
A condition causing slowly worsening hair loss and scarring along the front hairline, sometimes with eyebrow and eyelash loss.
Understanding Frontal fibrosing alopecia
In some cases the eyebrows, eyelashes, or other parts of the body are also involved. It usually starts in adulthood.
Signs & symptoms
GARD doesn't list a separate symptom list. Its summary describes:
- Slow hair loss near the forehead
- Scarring on the scalp
- Eyebrow or eyelash loss in some people
- Hair loss on other body areas in some
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Scarring Alopecia Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The exact cause is not known. It has been suggested that it may be due to hormonal changes or an autoimmune response.
Also known as: ffa
Patient organizations
- Scarring Alopecia FoundationFrontal fibrosing alopecia · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Frontal fibrosing alopecia.
Explore research for Frontal fibrosing alopecia
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