Frequently Asked Questions
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.
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 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.
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.
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 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 hair ever grow back?
Yes, the hair definitely can grow 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 disease turns
itself off. Treatments are most effective in milder cases.
What treatments are available for mild, patchy alopecia areata where less
than 50 percent scalp 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.
What treatments are available for extensive alopecia areata
where greater than 50 percent hair is lost?
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 minoxidil. See previous explanation under mild, patchy alopecia areata.
Topical immunotherapy. Another method of treating 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) or squaric acid dibutyl ester (SADBE) are applied to the scalp to produce
an allergic rash which resembles poison oak or ivy. Approximately 40% 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 disease turns
itself
off. An itchy rash may be uncomfortable in very hot weather, especially under
a wig. These treatments are not widely available 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/alopecia universalis). For this reason, an attractive
wig is an important option for some people. Proper attention will 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 (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 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.
Does the Foundation have a newsletter?
The Foundation's newsletter is published five 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.
What other information does the Foundation provide?
Click on Request Information for more details and an order form.
In addition to this brochure the Foundation has:
- This brochure 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 handbook on alopecia areata for use by mental health professionals and
volunteers who provide emotional support to those coping with this disease.
- 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.
- Annual reports.
Why should I become involved with 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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