Kids Konnect — Teens — AA Facts

These medical facts come from our current AA information brochure "What You Should Know About Alopecia Areata and The National Alopecia Areata Foundation."

What Is Alopecia Areata?

Alopecia areata is a common 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, but onset most often occurs in childhood. Over four million people in the United States are affected by alopecia areata.

In alopecia areata, the affected hair follicles become very small, drastically 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 (this is referred to as alopecia totalis) >or, hair is lost from the entire scalp and body (this is 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.

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.

What Is the Signal that Triggers the Condition to Start or Stop?

Current research suggests that something triggers the immune system to suppress the hair follicle. We do not yet know what this trigger is or whether it comes from outside the body, like a virus, or from inside. Recent research indicates that some persons have genetic markers that may increase their susceptibility to develop alopecia areata.

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 are less likely to have another family member with it. Those who develop their first patch of alopecia areata before the age of thirty are more likely to have other family members with it.

Alopecia areata often occurs in families whose members have had asthma, hay fever, atopic eczema, or other autoimmune conditions such as thyroid disease, early-onset diabetes, rheumatoid arthritis, lupus erythematosus, viti1igo, pernicious anemia, or Addison's disease.

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.

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 condition. 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 Hair Ever Grow Back?

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

Is Alopecia Areata Due to Nerves?

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

Is It Necessary to Change Plans Regarding School, Sports, Friends, Career, Dating, and Marriage?

No, not at all. People with alopecia areata do not need to limit their activities or expectations. They can do whatever they want to do.

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.

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 condition turns itself off. Treatments are most effective in milder cases.

What Treatments Are Available for Mild, Patchy Alopecia Areata? (Less Than 50 Percent Scalp Hair Loss)

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 (Rogaine Extra Strength) 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 (Rogaine Regular Strength) alone is not effective in alopecia areata; response may improve If cortisone cream is applied thirty minutes after the minoxidil. Topical minoxidil is safe, easy to use, and does not lower blood pressure in persons with normal blood pressure. Topical minoxidil solution is not 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 thirty to sixty 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 it.

What Treatments Are Available For Extensive Alopecia Areata? (Greater Than 50 Percent Scalp Hair)

Cortisone pills

Cortisone pills are sometimes given for extensive scalp hair loss. Cortisone taken internally is much stronger than local injections of cortisone into the skin. It is necessary to discuss possible side effects of cortisone pills with your physician. Healthy young adults often tolerate cortisone pills with few side effects. In general, however, cortisone pills are used in relatively few patients with alopecia areata due to health risks from prolonged use. Also, regrown hair is likely to fall out when the cortisone pills are stopped.

Topical minoxodil

See previous explanation under mild, patchy alopecia areata.

Topical immunotherapy

Another method of treating extensive alopecia areata or alopecia totalis/universalis, is known as topical immunotherapy and it involves producing an allergic rash or allergic contact dermatitis. Chemicals such as diphencyprone (DPCP), dinitrochlorobenzene (DNCB), or squaric acid dibutyl ester (SADBE) are applied to the scalp to produce an allergic rash which resembles poison oak or ivy. Approximately 40 percent of patients treated with topical immunotherapy will regrow scalp hair after about six months of treatment. Those who do successfully regrow scalp hair still need to continue the treatment to maintain the hair regrowth, at least until the condition turns itself off. An itchy rash may be uncomfortable in very hot weather, especially under a wig. These treatments are not available everywhere in the United States although they are used frequently in Canada and Europe.

Wigs

In general, treatments are much less effective for extensive alopecia areata (particularly alopecia totalis or alopecia universalis). For this reason, an attractive wig is an important option for some people. Proper attention win make a quality wig look completely natural; every wig has to be cut, thinned, and styled, often several times. To keep a net base wig from falling off, even during active sports, special double-sided tape can be purchased in beauty supply outlets and fastened to the inside of the wig.

For those with completely bare heads, there are suction caps to which any wig can be attached and there are entire suction cap wig units. These state-of-the-art wigs which make use of a silicon base to create a secure, vacuum-fit, are comfortable and easily removed by the wearer. Proper fit of a vacuum wig requires that any existing scalp hair be shaved. These wigs are generally more expensive than other types of wigs.

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 of the National Institutes of Health
• conducts ongoing public awareness programs and nationwide campaigns
• 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 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. The NAAF has awarded millions of dollars to fund research at over 40 university centers throughout the world.

Every four years, the NAAF co-sponsors an International Research Workshop on Alopecia Areata with 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, and the third in 1998.

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 present and hear the latest developments in research, treatment, support, and cosmetology. At the 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 conferences have grown every year and have added impetus to the Foundation's work and public awareness of alopecia areata.

Does The Foundation Have Support Groups?

The Foundation sponsors volunteer support groups an over the world as wed 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.

What Other Information Does The Foundation Provide?

In addition to this brochure the Foundation has:

• a brochure for children
• a brochure for parents
• a brochure that deals with coping
• a handbook on alopecia areata for use by mental health professionals and volunteers who provide emotional support to those coping with this disease
• a free seven minute video "This Weird Thing That Makes My Hair Fall Out -- Alopecia Areata" 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
• annual reports

Why Should I Become Involved with The Foundation?

In numbers, there's more than safety: there is strength, comfort, help, friendship, and action. The National Alopecia Areata Foundation brings together thousands with alopecia areata worldwide to provide support 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.