National Alopecia Areata Foundation
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FAQs

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General Questions

What is Alopecia Areata?
What does the National Alopecia Areata Foundation do?
What other information does the Foundation provide?
Why should I become involved in the Foundation?
 

Support Questions

Where can I get help?
How will alopecia areata affect my daily life?
Does the Foundation have a newsletter?
When in the Foundation’s annual international patient conference?
Does the Foundation have support groups?

Does the Foundation take hair donations?

 

 

Research Questions

What is the signal that triggers the disease to start or stop?
Is alopecia areata hereditary?
What other parts of the body are affected?
Does the hair ever grow back?
Is alopecia areata due to nerves?
Is there a cure for alopecia areata?
Are treatments available?
What treatments are available for extensive alopecia areata where greater than 50% hair is lost?
What research is being done?

 


 

General Answers

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. It is estimated that approximately two percent of the population will be affected at some point in their lives, or over 4.5 million people in the United States. 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.

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What does the National Alopecia Areata Foundation do?

The Foundation:

  • 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.

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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/dvd, “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.

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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.

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Support Answers

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.

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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.

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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.

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When in 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.

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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.  

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Research Answers

What is the signal that triggers the disease to start or stop?

Current research suggests that something triggers the immune system to suppress the hair follicle. It isn't known what this trigger is, and whether it comes from outside the body like a virus, or from inside. Recent research indicates that some persons have genetic markers that increase both their susceptibility to develop alopecia areata, as well as the degree of disease severity.

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Is alopecia areata hereditary?

Yes, heredity plays a role. In one out of five persons with alopecia areata, someone else in the family also has it. Those who develop alopecia areata for the first time after the age of thirty years have less likelihood that another family member will have it. Those who develop their first patch of alopecia areata before the age of thirty have a higher possibility that other family members will also have it.

Alopecia areata often occurs in families whose members have had asthma, hay fever, atopic eczema, or other autoimmune diseases such as thyroid disease, early-onset diabetes, rheumatoid arthritis, lupus erythematosus, vitiligo, pernicious anemia, or Addison's disease.

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What other parts of the body are affected?

In some people, the nails develop stippling that looks as if a pin had made rows of tiny dents. In a few, the nails are severely distorted. However, other than the hair and occasionally the nails, no other part of the body is affected.

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Does the hair ever grow back?

Yes, the hair definitely can grow even after years of extensive hair loss. It can also fall out again.

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Is alopecia areata due to nerves?

No, it is not a nervous disorder. Those who have alopecia areata have not caused in and have no control over its course.

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Is there a cure for alopecia areata?

At present, there is no cure for alopecia areata, although the hair may return by itself. There are various treatments, which are most effective in milder cases, but none are universally effective.

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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 occurs in two forms: a mild patchy form where less than 50 percent of scalp hair is lost, and an extensive form where greater than 50 percent of scalp hair is lost. These two forms of alopecia areata behave quite differently, and the choice of treatment depends on which form is present.

Current treatments do not turn alopecia areata off; they stimulate the follicle to produce hair again, and treatments need to be continued until the disease turns itself off. Treatments are most effective in milder cases.

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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 once a month. 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.

Topical minoxidil. Five percent topical 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. Two percent topical minoxidil solution alone is not effective in alopecia areata; response may improve if cortisone cream is applied 30 minutes after the minoxidil. Topical minoxidil is safe, easy to use, and does not lower blood pressure in persons with normal blood pressure. Neither 2 percent nor 5 percent topical minoxidil solution is effective in treating those with 100 percent scalp hair loss.

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.

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What research is being done?

There is extensive worldwide research focusing on the cause and treatment of all forms of alopecia areata. The National Alopecia Areata Foundation is leading this research effort by raising private funds and awarding grants to university centers in the United States, Canada, and Europe, and by working closely with the government to increase Federal funding for alopecia areata research. So far NAAF has awarded over two million dollars to fund research at numerous institutes throughout the world.

Every four years, the NAAF cosponsors an International Research Workshop on Alopecia Areata on the campus of the National Institutes of Health. The workshops bring together investigators for an open exchange of knowledge to guide further alopecia areata research. Many new collaborative efforts follow each workshop. The first workshop took place in 1990, the second in 1994, the third in 1998 and the fourth in 2002.

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