Questions
and Answers About Alopecia Areata
February
2003
This
booklet contains general information about alopecia areata (al-oh-PEE-shah
ar-ee-AH-tah). It describes what alopecia is, its causes, and treatment
options. Information is also provided on current research. If you have
further questions after reading this booklet, you may wish to discuss
them with your doctor.
What
Is Alopecia Areata?
Alopecia
areata is considered an autoimmune disease, in which the immune system,
which is designed to protect the body from foreign invaders such as
viruses and bacteria, mistakenly attacks the hair follicles, the tiny
cup-shaped structures from which hairs grow. This can lead to hair loss
on the scalp and elsewhere.
In
most cases, hair falls out in small, round patches about the size of
a quarter. In many cases, the disease does not extend beyond a few bare
patches. In some people, hair loss is more extensive. Although uncommon,
the disease can progress to cause total loss of hair on the head (referred
to as alopecia areata totalis) or complete loss of hair on the head,
face, and body (alopecia areata universalis).
What
Causes It?
In
alopecia areata, immune system cells called white blood cells attack
the rapidly growing cells in the hair follicles that make the hair.
The affected hair follicles become small and drastically slow down hair
production. Fortunately, the stem cells that continually supply the
follicle with new cells do not seem to be targeted. So the follicle
always has the potential to regrow hair.
Scientists
do not know exactly why the hair follicles undergo these changes, but
they suspect that a combination of genes may predispose some people
to the disease. In those who are genetically predisposed, some type
of trigger--perhaps a virus or something in the person's environment--brings
on the attack against the hair follicles.
Who
Is Most Likely To Get It?
Alopecia
areata affects an estimated four million Americans of both sexes and
of all ages and ethnic backgrounds. It often begins in childhood.
If
you have a close family member with the disease, your risk of developing
it is slightly increased. If your family member lost his or her first
patch of hair before age 30, the risk to other family members is greater.
Overall, one in five people with the disease have a family member who
has it as well.
Is
My Hair Loss a Symptom of a Serious Disease?
Alopecia
areata is not a life-threatening disease. It does not cause any physical
pain, and people with the condition are generally healthy otherwise.
But for most people, a disease that unpredictably affects their appearance
the way alopecia areata does is a serious matter.
The
effects of alopecia areata are primarily socially and emotionally disturbing.
In alopecia universalis, however, loss of eyelashes and eyebrows and
hair in the nose and ears can make the person more vulnerable to dust,
germs, and foreign particles entering the eyes, nose, and ears.
Alopecia
areata often occurs in people whose family members have other autoimmune
diseases, such as diabetes, rheumatoid arthritis, thyroid disease, systemic
lupus erythematosus, pernicious anemia, or Addison's disease. People
who have alopecia areata do not usually have other autoimmune diseases,
but they do have a higher occurrence of thyroid disease, atopic eczema,
nasal allergies, and asthma.
Can
I Pass It on to My Children?
It
is possible, but not likely, for alopecia areata to be inherited. 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.
Alopecia
areata is not like some genetic diseases in which a child has a 50-50
chance of developing the disease if one parent has it. 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, alopecia areata is 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 factors besides genetics are
required to trigger the disease.
To
learn more about the genes and other factors involved in alopecia areata
risk, the National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS) is funding an alopecia areata registry. The registry
is an organized network of five centers throughout the United States
that will identify and register patients with the disease and collect
data and blood samples (which contain genes). Data, including genetic
information, will be made available to researchers studying the genetic
basis and other aspects of disease and disease risk. (For more information
about the registry, see "How Can I Take
Part In Research?")
Will
My Hair Ever Grow Back?
There
is every chance that your hair will regrow, but it may also fall out
again. No one can predict when it might regrow or fall out. The course
of the disease varies from person to person. Some people lose just a
few patches of hair, then the hair regrows, and the condition never
recurs. Other people continue to lose and regrow hair for many years.
A few lose all the hair on their head; some lose all the hair on their
head, face, and body. Even in those who lose all their hair, the possibility
for full regrowth remains.
In
some, the initial hair regrowth is white, with a gradual return of the
original hair color. In most, the regrown hair is ultimately the same
color and texture as the original hair.
What
Can I Expect Next?
The
course of alopecia areata is highly unpredictable, and the uncertainty
of what will happen next is probably the most difficult and frustrating
aspect of the disease. You may continue to lose hair, or your hair loss
may stop. The hair you have lost may or may not grow back, and you may
or may not continue to develop new bare patches.
How
Is It Treated?
While
there is neither a cure for alopecia areata nor drugs approved for its
treatment, some people find that medications approved for other purposes
can help hair grow back, at least temporarily. The following are some
treatments for alopecia areata. Keep in mind that while these treatments
may promote hair growth, none of them prevent new patches or actually
cure the underlying disease. Consult your health care professional about
the best option for you.
- Corticosteroids--Corticosteroids
are powerful anti-inflammatory drugs similar to a hormone called cortisol
produced in the body. Because these drugs suppress the immune system
if given orally, they are often used in the treatment of various autoimmune
diseases, including alopecia areata. Corticosteroids may be administered
in three ways for alopecia areata:
- Local
injections--Injections of steroids directly into hairless
patches on the scalp and sometimes the brow and beard areas are
effective in increasing hair growth in most people. It usually
takes about 4 weeks for new hair growth to become visible. Injections
deliver small amounts of cortisone to affected areas, avoiding
the more serious side effects encountered with long-term oral
use. The main side effects of injections are transient pain, mild
swelling, and sometimes changes in pigmentation, as well as small
indentations in the skin that go away when injections are stopped.
Because injections can be painful, they may not be the preferred
treatment for children. After 1 or 2 months, new hair growth usually
becomes visible, and the injections usually have to be repeated
monthly. The cortisone removes the confused immune cells and allows
the hair to grow. Large areas cannot be treated, however, because
the discomfort and the amount of medicine become too great and
can result in side effects similar to those of the oral regimen.
- Oral
corticosteroids--Corticosteroids taken by mouth are a
mainstay of treatment for many autoimmune diseases and may be
used in more extensive alopecia areata. But because of the risk
of side effects of oral corticosteroids, such as hypertension
and cataracts, they are used only occasionally for alopecia areata
and for shorter periods of time.
- Topical
ointments--Ointments or creams containing steroids rubbed
directly onto the affected area are less traumatic than injections
and, therefore, are sometimes preferred for children. However,
corticosteroid ointments and creams alone are less effective than
injections; they work best when combined with other topical treatments,
such as minoxidil or anthralin.
- Minoxidil
(5%) (Rogaine*)--Topical minoxidil solution promotes hair
growth in several conditions in which the hair follicle is small and
not growing to its full potential. Minoxidil is FDA-approved for treating
male and female pattern hair loss. It may also be useful in promoting
hair growth in alopecia areata. The solution, applied twice daily,
has been shown to promote hair growth in both adults and children,
and may be used on the scalp, brow, and beard areas. With regular
and proper use of the solution, new hair growth appears in about 12
weeks.
*Brand names included in this booklet are provided as examples only,
and their inclusion does not mean that these products are endorsed
by the National Institutes of Health or any other Government agency.
Also, if a particular brand name is not mentioned, this does not mean
or imply that the product is unsatisfactory.
- Anthralin
(Psoriatec)--Anthralin, a synthetic tar-like substance that alters
immune function in the affected skin, is an approved treatment for
psoriasis. Anthralin is also commonly used to treat alopecia areata.
Anthralin is applied for 20 to 60 minutes ("short contact therapy")
to avoid skin irritation, which is not needed for the drug to work.
When it works, new hair growth is usually evident in 8 to 12 weeks.
Anthralin is often used in combination with other treatments, such
as corticosteroid injections or minoxidil, for improved results.
- Sulfasalazine--A
sulfa drug, sulfasalazine has been used as a treatment for different
autoimmune disorders, including psoriasis. It acts on the immune system
and has been used to some effect in patients with severe alopecia
areata.
- Topical
sensitizers--Topical sensitizers are medications that, when
applied to the scalp, provoke an allergic reaction that leads to itching,
scaling, and eventually hair growth. If the medication works, new
hair growth is usually established in 3 to 12 months. Two topical
sensitizers are used in alopecia areata: squaric acid dibutyl ester
(SADBE) and diphenylcyclopropenone (DPCP). Their safety and consistency
of formula are currently under review.
- Oral
cyclosporine--Originally developed to keep people's immune
systems from rejecting transplanted organs, oral cyclosporine is sometimes
used to suppress the immune system response in psoriasis and other
immune-mediated skin conditions. But suppressing the immune system
can also cause problems, including an increased risk of serious infection
and possibly skin cancer. Although oral cyclosporine may regrow hair
in alopecia areata, it does not turn the disease off. Most doctors
feel the dangers of the drug outweigh its benefits for alopecia areata.
- Photochemotherapy--In
photochemotherapy, a treatment used most commonly for psoriasis, a
person is given a light-sensitive drug called a psoralen either orally
or topically and then exposed to an ultraviolet light source. This
combined treatment is called PUVA. In clinical trials, approximately
55 percent of people achieve cosmetically acceptable hair growth using
photochemotherapy. However, the relapse rate is high, and patients
must go to a treatment center where the equipment is available at
least two to three times per week. Furthermore, the treatment carries
the risk of developing skin cancer.
- Alternative
therapies--When drug treatments fail to bring sufficient
hair regrowth, some people turn to alternative therapies. Alternatives
purported to help alopecia areata include acupuncture, aroma therapy,
evening primrose oil, zinc and vitamin supplements, and Chinese herbs.
Because many alternative therapies are not backed by clinical trials,
they may or may not be effective for regrowing hair. In fact, some
may actually make hair loss worse. Furthermore, just because these
therapies are natural does not mean that they are safe. As with any
therapy, it is best to discuss these treatments with your doctor before
you try them.
In
addition to treatments to help hair grow, there are measures that can
be taken to minimize the physical dangers or discomforts of lost hair.
- Sunscreens
are important for the scalp, face, and all exposed areas.
- Eyeglasses (or sunglasses) protect the eyes from
excessive sun, and from dust and debris, when eyebrows or eyelashes
are missing.
- Wigs, caps, or scarves protect the scalp from the sun and keep
the head warm.
- Antibiotic ointment applied inside the nostrils helps to protect
against organisms invading the nose when nostril hair is missing.
How
Will Alopecia Areata Affect My Life?
This
is a common question, particularly for children, teens, and young adults
who are beginning to form lifelong goals and who may live with the effects
of alopecia areata for many years. The comforting news is that alopecia
areata is not a painful disease and does not make people feel sick physically.
It is not contagious, and people who have the disease are generally
healthy otherwise. It does not reduce life expectancy and it should
not interfere with the ability to achieve such life goals as going to
school, working, marrying, raising a family, playing sports, and exercising.
The
emotional aspects of living with hair loss, however, can be challenging.
Many people cope by learning as much as they can about the disease;
speaking with others who are facing the same problem; and, if necessary,
seeking counseling to help build a positive self-image. To address quality-of-life
issues for alopecia areata and all other skin diseases, the NIAMS sponsored
a scientific meeting in September 2002 on the burden of skin diseases.
How
Can I Cope With the Effects of This Disease?
Living
with hair loss can be hard, especially in a culture that views hair
as a sign of youth and good health. Even so, most people with alopecia
areata are well-adjusted, contented people living full lives.
The
key to coping is valuing yourself for who you are, not for how much
hair you have or don't have. Many people learning to cope with alopecia
areata find it helpful to talk with other people who are dealing with
the same problems. More than four million people nationwide have this
disease at some point in their lives, so you are not alone. If you would
like to be in touch with others with the disease, the National Alopecia
Areata Foundation (NAAF) can help through its pen pal program, message
boards, annual conference, and support groups that meet in various locations
nationwide. To find contact information for NAAF and other organizations
that can help people with alopecia areata, see "Where
Can I Learn More About Alopecia Areata?".
Another
way to cope with the disease is to minimize its effects on your appearance.
If you have total hair loss, a wig or hairpiece can look natural and
stylish. For small patches of hair loss, a hair-colored powder, cream,
or crayon applied to the scalp can make hair loss less obvious by eliminating
the contrast between the hair and the scalp. Skillfully applied eyebrow
pencil can mask missing eyebrows.
Children
with alopecia areata may prefer to wear bandanas or caps. There are
many styles available to suit a child's interest and mood-some even
have ponytails attached.
For
women, attractive scarves can hide patchy hair loss; jewelry and clothing
can distract attention from patchy hair; and proper makeup can camouflage
the effects of lost facial hair. If you would like to learn more about
camouflaging the cosmetic aspects of alopecia areata, ask your doctor
or members of your local support group to recommend a cosmetologist
who specializes in working with people whose appearance is affected
by medical conditions.
Is
Research Close to Finding Better Treatments or a Cure?
While
a cure is not imminent, researchers are making headway toward a better
understanding of the disease. This increased understanding will likely
lead the way to better treatments for alopecia areata and eventually
a way to prevent or even cure it.
Alopecia
research ranges from the most basic studies of the mechanisms of hair
growth and hair loss in mice to testing medications and ways to apply
medications to help regrow hair in people. Both the National Institutes
of Health and the National Alopecia Areata Foundation support research
into the disease and its treatment. Here are some areas of research
that hold promise.
- Developing
an animal model--This is a critical first step toward understanding
the disease, and much progress has been made. By developing a mouse
with a disease similar to human alopecia areata, researchers hope
to learn more about the mechanism of the disease and eventually develop
immune system treatments for the disease in people.
- Mapping
genes--Scientists are studying the possible genetic causes
and mechanism of the disease both in families that have one or more
persons with the disease and in the general population. An understanding
of the genetics of the disorder will aid in disease prevention, early
intervention, and development of specific therapies.
- Studying
hair follicle development--By studying how hair follicles
form in mouse embryos, researchers hope to gain a better understanding
of hair cycle biology that may lead to treatments for the underlying
disease process.
- Targeting
the immune system--Several new agents found to be effective
in treating psoriasis may prove to be effective in alopecia areata.
These drugs work by blocking certain chemical messengers that play
a role in the immune response, or by interfering with the activity
of white blood cells (called T-cells) that are involved in the immune
system's attack on hair follicles. New therapies for treating other
autoimmune diseases like rheumatoid arthritis and lupus may also benefit
patients with alopecia areata.
- Finding
better ways to administer drugs--One limitation of current
topical therapies is getting the drug to the source of the problem.
Scientists are looking for a substance that penetrates the fat under
the skin to deliver medication directly to hair follicles. In laboratory
animals, topically applied synthetic sacs called liposomes seem to
fill the bill. Studies are still needed to show whether liposomes
do the same for people.
- Understanding
cytokines--Chemical messengers called cytokines play a role
in regulating the body's immune response, whether it is the normal
response to a foreign invader such a virus or an abnormal response
to a part of the body. Researchers believe that by giving certain
inflammation-suppressing cytokines, they may be able to slow down
or stop the body's abnormal response to the hair follicles. Because
giving the cytokines systemically may cause adverse effects, they
believe a topical medication using liposomes to get the agents to
the root of the hair inside the follicle may be preferable.
- Understanding
stem cell biology--Epithelial stem cells are immature cells
that are responsible for regenerating and maintaining a variety of
tissues, including the skin and the hair follicles. Stem cells in
the follicle appear to be spared from injury in alopecia areata, which
may explain why the potential for regrowth is always there in people
with the disease. By studying the biology of these cells, and their
immediate offspring, which seem to be targeted by the immune system,
scientists hope to gain a better understanding of factors that trigger
the disease.
How
Can I Take Part in Research?
A
good place to start is the National Alopecia Areata Registry sponsored
by the NIAMS.
The
registry, a network of five centers, will identify and register patients
with the disease and collect information and blood samples (containing
genes). Data, including genetic information, will be made available
to researchers studying the genetic basis and other aspects of the disease
and disease risk.
The
registry is seeking U.S. residents with alopecia areata, alopecia totalis,
or alopecia universalis diagnosed by a dermatologist. Although the registry
itself will not be involved in any kind of treatment for alopecia areata,
people who register will be made aware of studies for which they may
qualify.
To
take part in the registry, people don't have to live near or travel
to one of the five centers; however, they do have to meet some requirements
to participate. For more information, log onto the registry Web site
at www.mdanderson.org/departments/alopecia or have your doctor contact:
Madeline
Duvic, M.D., Principal Investigator
Department of Dermatology
M.D. Anderson Cancer Center
1515 Holcombe Boulevard, Box 434
Houston, TX 77030
Phone: 713-792-5999
Fax: 713-794-1491
E-mail: alopeciaregistry@mdanderson.org
Where
Can I Learn More About Alopecia Areata?
You
can get additional information through the following organizations:
- National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484 or
877-22-NIAMS (226-4267) (free of charge)
TTY: 301-565-2966
Fax: 301-718-6366
E-mail: NIAMSInfo@mail.nih.gov
www.niams.nih.gov
- National
Center for Complementary and Alternative Medicine Clearinghouse
P.O. Box 7923
Gaithersburg, MD 20898
Phone: 301-519-3153 or
888-644-6226 (free of charge)
TTY: 866-464-3615
Fax: 866-464-3616
E-mail: info@nccam.nih.gov
nccam.nih.gov
- American
Academy of Dermatology
P.O. Box 4014
Schaumburg, IL 60168-4014
Phone: 847-330-0230 or
888-462-DERM (3376) (free of charge)
Fax: 847-330-0500
www.aad.org
- National
Alopecia Areata Foundation
P.O. Box 150760
San Rafael, CA 94915-0760
Phone: 415-472-3780
Fax: 415-472-5343
E-mail: info@naaf.org
www.naaf.org
- American
Hair Loss Council
125 Seventh Street, Suite 625
Pittsburgh, PA 15222
Phone: 412-765-3666
Fax: 412-765-3669
www.ahlc.org
Glossary
Acupuncture--a
traditional Chinese system of healing in which symptoms are relieved
by inserting needles beneath the skin at selected points and then stimulating
the points by rotating the needles or exposing them to heat or electrical
current.
Addison's
disease--a condition that occurs when the adrenal glands (a
pair of glands situated on top of the kidneys) fail to secrete enough
corticosteroid hormones. Without treatment, the disease can be fatal.
Alopecia
areata--an autoimmune, often reversible disease in which loss
of hair occurs in sharply defined areas usually involving the scalp
or beard, but at times every hair on the body.
Alopecia
areata totalis--a form of alopecia areata characterized by
the total loss of hair from the scalp and face.
Alopecia
areata universalis--a form of alopecia areata in which all
hair on the scalp, face, and body is lost.
Aroma
therapy--the therapeutic use of essential oils (highly concentrated
aromatic extracts distilled from a variety of aromatic plant materials
including grasses, leaves, flowers, needles and twigs, fruit peels,
wood, and roots) to promote the health of body, mind, and spirit.
Autoimmune
disease--a disease that results when the immune system mistakenly
attacks the body's own tissues. Rheumatoid arthritis and systemic lupus
erythematosus are autoimmune diseases ("auto" means self).
Chemotherapy--the
use of strong drugs to suppress the immune system. Though originally
associated with cancer treatment, chemotherapy is used for many different
diseases involving the immune system.
Corticosteroids--potent
anti-inflammatory hormones that are made naturally in the body or synthetically
(man-made) for use as drugs. They are also called glucocorticoids. The
most commonly prescribed drug of this type is prednisone.
Cyclosporine--a
strong drug that suppresses the immune system. Originally developed
to keep the body's immune system from rejecting transplanted organs,
cyclosporine is being used increasingly in autoimmune diseases, including
(in rare cases) alopecia areata.
Diabetes--a
disease in which the body does not produce or properly use insulin,
a hormone that is necessary to convert sugar, starches, and other food
into energy.
Evening
primrose oil--the oil of a weedy plant containing the essential
fatty acid gamma linolenic acid (GLA), which is converted into anti-inflammatory
agents by the body. Evening primrose oil is available as a nutritional
supplement and touted as a pain and inflammation reliever.
Hair
bulb--a bulbous collection of actively growing cells at the
base of the follicle that constantly produces a strand of hair.
Hair
follicle--a small cup-shaped structure in the skin from which
hair grows. The cup is lined with cells and connective tissue.
Immune
system--a complex network of specialized cells and organs that
work together to defend the body against attacks by "foreign" invaders
such as bacteria and viruses. In some rheumatic conditions, it appears
that the immune system does not function properly and may even work
against the body.
Liposome--a
synthetic microscopic globule made of fatty layers encapsulating drugs
or other substances. Liposomes are often used to deliver substances
to the body's cells and tissues.
Pernicious
anemia--a potentially dangerous form of anemia, usually caused
by an autoimmune process, which results in a deficiency of vitamin B-12.
Rheumatoid
arthritis--an autoimmune disease that targets primarily the
membrane lining the joints, leading to pain, stiffness, swelling, and
joint deformity.
Systemic
lupus erythematosus--a chronic autoimmune disease of the connective
tissue that can attack and damage the skin, joints, blood vessels, and
internal organs.
Topical
sensitizers--medications that, when applied to the scalp, provoke
an allergic reaction that leads to itching, scaling, and often hair
growth. They include squaric acid dibutyl ester and diphenylcyclopropenone.
Acknowledgments
The
NIAMS gratefully acknowledges the assistance of George Cotsarelis, M.D.,
University of Pennsylvania Medical Center, Philadelphia; Vicki Kalabokes,
National Alopecia Areata Foundation, San Rafael, CA; Alan Moshell, M.D.,
NIAMS, NIH; David Norris, M.D., University of Colorado Health Sciences
Center, Denver; and Vera Price, M.D., University of California, San
Francisco, in the preparation of this booklet. Mary Anne Dunkin was
the author of this booklet.
The mission of the National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the
Department of Health and Human Services' National Institutes of Health
(NIH), is to support research into the causes, treatment, and prevention
of arthritis and musculoskeletal and skin diseases, the training of
basic and clinical scientists to carry out this research, and the dissemination
of information on research progress in these diseases. The National
Institute of Arthritis and Musculoskeletal and Skin Diseases Information
Clearinghouse is a public service sponsored by the NIAMS that provides
health information and information sources. Additional information can
be found on the NIAMS Web site at http://www.niams.nih.gov/.
This booklet is not copyrighted. Readers
are encouraged to duplicate and distribute as many copies as needed.
Additional copies of this booklet are available
from
National Institute of Arthritis and Musculoskeletal
and Skin Diseases (NIAMS)
NIAMS/National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
NIH Publication No. 03-5143
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