What is alopecia areata?
Alopecia areata is a common autoimmune disease that results in the loss of hair on the scalp and elsewhere. It usually starts with one or more small, round, smooth patches. It occurs in males and females of all ages and races, but onset most often occurs in childhood. Approximately 6.8 million people in the United States and 147 million worldwide have or will develop alopecia areata at some point in their lives. In alopecia areata, the affected hair follicles are mistakenly attacked in groups by a person's own immune system (white blood cells), resulting in the arrest of the hair growth stage. These affected follicles become very small, drastically slow down production, and grow no hair visible above the surface for months or years. The scalp is the most commonly affected area, but the beard or any hair-bearing site can be affected alone or together with the scalp. Some people develop only a few bare patches that regrow hair within a year. In others, extensive patchy loss occurs, and in a few, all scalp hair is lost (referred to as alopecia totalis) or, hair is lost from the entire scalp and body (referred to as alopecia universalis). No matter how widespread the hair loss, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. In all cases, hair regrowth may occur even without treatment and even after many years.
- raises funds and awards research grants to study the cause of alopecia areata, to develop effective treatments, and to seek a cure.
- Provides emotional support through personal contact and written materials to help those with alopecia areata and their families.
- Acts as the international center for alopecia areata information.
- Co-sponsors International Research Workshops on alopecia areata with the National Institute of Arthritis and Musculoskeletal and Skin Diseases(NIAMS) of the National Institutes of Health(NIH).
- Conducts ongoing public awareness programs and nationwide campaigns to educate about alopecia areata.
- Organizes an annual patient conference.
- Educates State and Federal officials on the need for fair insurance laws and greater government-sponsored medical research.
- Provides brochures for doctors to give to their patients.
What other information does the Foundation provide?
- An informational brochure that is available in five languages - Spanish, Portuguese, Italian, French, Chinese, and German.
- A brochure for children.
- A brochure for parents.
- A brochure that deals with coping.
- A School Packet for use in the classroom of a child with alopecia areata.
- A Community Awareness Packet for individuals interested in educating their communities about alopecia areata.
- A nine-minute video, “Alopecia Areata: Why My Hair Falls Out” that is available to any children who need a way to share their feelings about alopecia areata with friends, family, peers, schoolmates, principals and teachers.
- Detailed information on current research, current treatments, and medical information.
- A health insurance packet to help you with your submission of a claim or appeal.
- A quarterly newsletter.
- Annual Reports.
Why should I become involved in the Foundation?
In numbers, there's more than safety. There's strength, comfort, help, friendship, and action in numbers, too. The National Alopecia Areata Foundation brings together thousands with alopecia areata worldwide to reassure one another, spur research, and bring an end to this disease. If you have alopecia areata, the Foundation can help you, you can help the Foundation, and you can help yourself.
Help yourself by sharing. It may seem you are the only person in the world with alopecia areata, but you are not. Help yourself by sharing with others like you. You have no idea what a comfort such sharing can be. Talk and listen to people who understand; know you are not alone; face the sometimes hostile world bolstered by the friendship of others who care. When you feel comfortable with yourself in dealing with this disease continue to help others who need help to cope with it.
Where can I get help?
The National Alopecia Areata Foundation was founded in 1981 when a young Californian with the disease looked for others to share and understand her problems. It has grown into the world center of alopecia areata information, research, and service. Located in San Rafael, California, the Foundation is governed by a volunteer Board of Directors and has a professional Chief Executive Officer and staff. The Foundation is represented in Washington, D.C., and the Chief Executive Officer and others have testified before Congressional Committees.
How will alopecia areata affect my daily life?
Alopecia areata is not medically disabling; persons with alopecia areata are usually in excellent health. But emotionally, this disease can be challenging, especially for those with extensive hair loss. One of the purposes of the National Alopecia Areata Foundation is to reach out to individuals and families with alopecia areata and help them live full, productive lives. There are thousands of successful, well-adjusted, contented people living with this disease. The emotional pain of alopecia areata can be overcome with one's own inner resources, sound medical facts, and the support of others. Sometimes professional counseling from a psychiatrist, psychologist, or social worker is needed to develop one's self-confidence and positive self-image.
Does the Foundation have a newsletter?
The Foundation's newsletter is published four times a year, providing a forum for people with alopecia areata and their friends and families to interact and receive the latest information on all aspects of the disease. It enables people with alopecia areata to speak out about the problems associated with the disease and how to deal with them. It contains news about research and treatments, personal stories, cosmetic tips, information on support groups, and a special children's section called KidNet.
When is the Foundation’s annual international patient conference?
Once a year, the Foundation organizes a weekend summer conference for people with alopecia areata and their families. Doctors, researchers, and exhibitors attend to hear and present the latest developments in research, treatment, support, and cosmetology. At the NAAF Conference, people from all over the world find a new family of support to help them cope with alopecia areata in their daily lives. These NAAF Conferences have grown every year and have added impetus to the Foundation's work and public awareness of alopecia areata. Click here for more information on this year's conference.
Does the Foundation have support groups?
The Foundation sponsors volunteer support groups all over the world as well as telephone support contacts. These groups offer people with alopecia areata a chance to share feelings, experiences, and solutions to coping with the disease. Each group has a leader who has alopecia areata or is closely associated with someone who does. Support groups further the Foundation's goal of research, emotional support, and public awareness.
Does the Foundation take hair donations?
We have a wig manufacturer in New Zealand who accepts donated hair for making wigs. Please read these instructions on how to donate your hair.
What is the signal that triggers the disease to start or stop?
Current research suggests that something “triggers” the immune system to attack healthy hair follicles. It isn't known what this trigger is, or whether it is initiated inside the body (from a virus or bacteria) or from outside the body (from something in your surroundings). Research indicates that some people have genetic markers that increase both their susceptibility to develop alopecia areata, as well as the degree of disease severity.
Is alopecia areata hereditary?
Yes, heredity plays a role. Alopecia areata is a “polygenic disease” which requires the contribution of many genes to bring about the disease, as well as a contribution from the environment. However, most children with alopecia areata do not have a parent with the disease, and the vast majority of parents with alopecia areata do not pass it along to their children. There is no way to accurately calculate the risk of passing it on to children because alopecia areata is a complex disease, with contributions to risk from several genes. Scientists believe that there may be a number of genes that predispose certain people to the disease. It is highly unlikely that a child would inherit all of the genes needed to predispose him or her to the disease.
Even with the right (or wrong) combination of genes, developing alopecia areata is still not a certainty. In identical twins, who share all of the same genes, the concordance rate is only 55 percent. In other words, if one twin has the disease, there is only a 55-percent chance that the other twin will have it as well. This shows that other environmental factors besides genetics are required to trigger the disease. The exact environmental factors that contribute to alopecia areata are still being worked out.
What other parts of the body are affected?
Hair loss can take place on the scalp, face, or any other part of the body with hair.
In some people, the nails develop stippling that looks as if a pin has made rows of tiny dents. In a few, the nails are severely distorted. However, other than the hair and occasionally the nails, other parts of the body are usually not affected.
Does the hair ever grow back?
Yes, the hair can grow back even after years of extensive hair loss. It can also fall out again.
Is alopecia areata due to nerves?
No. Those who have alopecia areata have not caused it and have no control over its course.
Is there a cure for alopecia areata?
At present, there is no definitive cure for alopecia areata, although the hair may regrow by itself. There are various treatments which are most effective in milder cases, but none are universally effective and may need to be used for an extended period of time.
Are treatments available?
There are several available treatments; choice of treatment depends mainly on a person's age and the extent of their hair loss.
Alopecia areata can present in different forms. In alopecia areata patchy, one or more small patches of hair loss develop on the scalp or other places on the body that grow hair. Most commonly, hair loss remains patchy, but in some cases, hair loss progresses across the entire scalp, which is called alopecia totalis, or across the entire body, which is called alopecia universalis.
Current treatments do not turn alopecia areata off; they block the immune system attack and/or stimulate the hair follicle to produce hair again. Treatments may need to be continued long-term to support continued hair growth. Treatments are most effective in milder cases. Even if hair is regrown, there is no guarantee that it won’t fall out again once treatment is stopped.
What treatments are available for extensive alopecia areata where greater than 50% hair is lost?
Cortisone injections. The most common treatment is the injection of cortisone into the bare skin patches. The injections are usually given by a dermatologist who uses a tiny needle to give multiple injections into the skin in and around the bare patches. The injections are repeated usually every four to six weeks. Both the needle prick and the slight tingling are usually well tolerated and there is no discomfort after leaving the doctor's office. If new hair growth occurs, it is usually visible within four weeks. Treatment, however, does not prevent new patches from developing. There are few side effects from local cortisone injections. Occasionally, temporary depressions in the skin result from the local injections, but these "dells" usually fill in by themselves.
Minoxidil. Topical five percent minoxidil solution applied twice daily may grow hair in alopecia areata. Scalp, eyebrows, and beard hair may respond. If scalp hair regrows completely, treatment can be stopped. Topical minoxidil is safe, easy to use, and does not lower blood pressure in persons with normal blood pressure. Topical minoxidil solution on its own is not effective in treating those with extensive hair loss, but may be used in combination with other treatments. Oral minoxidil is another option that can be used in more severe cases, under the guidance of a physician.
Topical Immunotherapy. Topical immunotherapy is used to treat extensive alopecia areata, alopecia totalis, and alopecia universalis. This form of treatment involves applying chemicals such as diphencyprone (DPCP), dinitrochlorobenzene (DNCB) or squaric acid dibutyl ester (SADBE) to the scalp. This causes an allergic rash (allergic contact dermatitis) that looks like poison oak or ivy, which alters the immune response. Approximately 40% of patients treated with topical immunotherapy will regrow scalp hair after about six months of treatment. Patients who successfully regrow scalp hair usually must continue treatment in order to maintain the regrowth.
Anthralin cream or ointment. Another treatment is the application of anthralin cream or ointment. Anthralin is a synthetic, tar-like substance that has been used widely for psoriasis. Anthralin is applied to the bare patches once daily and washed off after a short time, usually 30 to 60 minutes later. If new hair growth occurs, it is seen in eight to twelve weeks. Anthralin can be irritating to the skin and can cause temporary, brownish discoloration of the treated skin. By using short treatment times, skin irritation and skin staining are reduced without decreasing effectiveness. Care must be taken not to get anthralin in the eyes. Hands must be washed after applying.
JAK inhibitors (in clinical trials). Janus kinase (JAK) inhibitors are medications taken orally that modulate the immune system’s attack on hair follicles and include tofacitinib, baricitinib, ritilecitinib and CTP-543, among others. JAK inhibitors are showing promise in clinical trials for alopecia areata. Currently JAK inhibitors, such as tofacitinib (Xeljanz), that are FDA-approved for other diseases can only be used off-label for the treatment of alopecia areata.