Frontal fibrosing alopecia

Title

Other Names:

FFA

Categories:

Skin Diseases

This disease is grouped under:

Lichen planopilaris

Summary Summary

Frontal fibrosing alopecia (FFA) is a form of lichen planopilaris that is characterized primarily by slowly progressive hair loss (alopecia) and scarring on the scalp near the forehead. In some cases, the eyebrows, eye lashes and/or other parts of the body may be involved, as well. Although it has been suggested that FFA may be due to hormonal changes or an autoimmune response, the exact cause of this condition is not yet known.^[1]^[2]^[3] There is currently no cure for FFA; however, treatment with certain types of medications may stop or slow hair loss in some cases.^[2]

Last updated: 12/2/2016

Symptoms Symptoms

Frontal fibrosing alopecia (FFA) is characterized primarily by hair loss (alopecia) and scarring on the scalp near the forehead. The band of hair loss on the front and sides of the scalp is usually symmetrical and slowly progressive (worsening over time). The skin in the affected area often looks normal but may be pale, shiny or mildly scarred.^[2]

Approximately half of all affected people experience loss of eyebrows, as well. Less commonly, the eyelashes may also be involved. Some people with FFA develop hair loss in areas other than the scalp and face.^[1]^[4]

In some cases, women with FFA also have female pattern hair loss, which is associated with thinning of hair on the scalp due to increased hair shedding and/or a reduction in hair volume.^[2]

Last updated: 12/2/2016

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Cause Cause

The exact underlying cause of frontal fibrosing alopecia (FFA) is unknown. FFA is thought to be an autoimmune condition in which an affected person's immune system mistakenly attacks the hair follicles (structures in the skin that make hair). Scientists also suspect that there may be a hormonal component since the condition most commonly affects post-menopausal women over age 50.^[1]^[2]

Last updated: 12/2/2016

Inheritance Inheritance

While most cases appear to be isolated and the only one in a particular family, there have been familial cases reported in the literature.^[5]^[6] Genetic studies, however, have been lacking. A 2016 study suggests that there are both genetic and environmental components involved in FFA.^[5]

Last updated: 12/2/2016

Diagnosis Diagnosis

Frontal fibrosing alopecia is often suspected based on the presence of characteristic signs and symptoms. The diagnosis can be confirmed by examining a small sample of skin (skin biopsy) from the affected area. In some cases, laboratory studies may be ordered to rule out other conditions that cause similar features.^[2]^[3]

Last updated: 12/2/2016

Treatment Treatment

Unfortunately, there is currently no cure for frontal fibrosing alopecia (FFA).^[2] Because the hair loss associated with this condition is thought to be caused by inflammation of hair follicles, treatment often involves using anti-inflammatory medications or ointments, such as corticosteroids, tetracyclines, or hydroxychloroquine (brand name Plaquenil), to reduce inflammation and suppress the body's immune system.^[7] Medications that block the production of the male hormone 5-alpha reductase (finasteride) have been reported to stop further hair loss in some women.^[2]^[4] Intralesional injection of medication and systemic therapies (taken by mouth) seem to be more effective than those applied to the skin. In many cases, a combination of treatments works best.^[4] Some researchers continue to question whether treatment is effective or if hair loss in FFA just stops naturally.^[8]

Last updated: 12/2/2016

Prognosis Prognosis

The long-term outlook (prognosis) for people with frontal fibrosing alopecia varies. It is generally slowly progressive (worsening over time); however, the condition does stabilize after a few years in some cases.^[2]

Last updated: 12/2/2016

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to Frontal fibrosing alopecia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

American Hair Loss Association
23679 Calabasas Road # 682
Calabasas, CA 91301-1502
E-mail: inquire@americanhairloss.org
Website: http://americanhairloss.org
Cicatricial Alopecia Research Foundation (C.A.R.F.)
303 West State Street
Geneva, IL 60134
Telephone: 310-801-3450
E-mail: info@carfintl.org
Website: http://www.carfintl.org

Do you know of an organization? We want to hear from you.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The Cicatricial Alopecia Research Foundation has an information page on Frontal fibrosing alopecia. Click on the link to view this information page.
DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
PubMed is a searchable database of medical literature and lists journal articles that discuss Frontal fibrosing alopecia. Click on the link to view a sample search on this topic.

News & Events News & Events

News

NCATS Rare Diseases Are Not Rare! Challenge
October 9, 2018
The NIH Undiagnosed Diseases Network Expands
September 26, 2018

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

I have been diagnosed with frontal fibrosing hair loss (alopecia). Is this condition going to cause all of my hair to fall out or will the hair loss stop at some point? Will medication help, or are the side effects too concerning? See answer

Have a question? Contact a GARD Information Specialist.

References References

Arnold S. & Cooper S. Frontal fibrosing alopecia. Orphanet. May 2011; http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=254492.
Singh D, Oakley A. Frontal fibrosing alopecia. DermNet NZ. January 2015; http://dermnetnz.org/hair-nails-sweat/frontal-fibrosing-alopecia.html.
Basil M Hantash, MD. Scarring Alopecia. Medscape. February 26, 2016; http://emedicine.medscape.com/article/1073559-overview.
Shapiro J & Otberg N. Lichen planopilaris. UpToDate. 2016; http://www.uptodate.com/contents/lichen-planopilaris.
Tziotzios C, Stefanato CM, Fenton DA, Simpson MA, McGrath JA. Frontal fibrosing alopecia: reflections and hypotheses on aetiology and pathogenesis. Exp Dermatol. 2016 Nov; 25(11):847-852. https://www.ncbi.nlm.nih.gov/pubmed/27198858.
Navarro-Belmonte MR, Navarro-López V, Ramírez-Boscà A, Martínez-Andrés MA, Molina-Gil C, González-Nebreda M, Asín-Llorca M. Case series of familial frontal fibrosing alopecia and a review of the literature. J Cosmet Dermatol. 2015 Mar; 14(1):64-9. https://www.ncbi.nlm.nih.gov/pubmed/25614294.
Frequently Asked Questions. Cicatricial Alopecia Research Foundation. December 15, 2015; http://www.carfintl.org/faq.php.
Tan KT, Messenger AG. Frontal fibrosing alopecia: clinical presentations and prognosis. British Journal of Dermatology. 2009; 160:75-79. http://www.ncbi.nlm.nih.gov/pubmed/18811690.