|Volume 5 Issue 219 Published - 14:00 UTC 08:00 EST 7-Aug-2003 Next Update - 14:00 UTC 08:00 EST 8-Aug-2003||Editor: Susan K. Boyer, RN
© Vidyya., Inc.
All rights reserved.
Information for patients: Questions and answers about alopecia areata
This guide 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.
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).
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.
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.
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.
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?")
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.
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.
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.
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.
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.
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.
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.
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.AlopeciaAreataRegistry.org or have your doctor contact:
Madeline Duvic, M.D., Principal Investigator
You can get additional information through the following organizations:
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.
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.