FAQ

Here is a list of questions patients ask most

Alopecia

Photo courtesy of curespotbaldness

Can I pass it on to my children?

It is possible for alopecia areata to be inherited. However, 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) sponsored the development of an alopecia areata registry. (For more information about the registry, see “What Are Some Promising Areas of Research?”)

How will Alopecia 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 going to school, playing sports and exercising, pursuing any career, working, marrying, and raising a family.

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.

What are topical sensitizers?

Q. I've heard that chemicals can be painted on the scalp to make the hair grow but that we can't get them in this country. Why is this?

A. Topical sensitizers are medications which when applied topically create an allergic reaction which is characterized by itching and redness. If this therapy works, new hair growth is usually seen in 3 to 12 months. There are three topical sensitizers which are used in medical practice. Their names are dinitrochlorobenzene, squaric acid dibutyl ester and diphenylcyclopropenone. These chemicals are available in the United States but their use in the management of alopecia areata has not been subjected to vigorous testing as required by the Food and Drug Administration. It is anticipated that in the very near future the type of testing required by our government will be initiated in volunteer patients with extensive hair loss.

Diagram of hair loss

Image courtesty of DurMD

FAQ

Alopecia Areata Frequently Asked Questions: Minimize
The following are frequently asked questions on alopecia areata. The information provided is not meant to be a substitute for the information obtained at an evaluation and by discussion with a physician, but merely to encourage understanding of this condition. No questions regarding individual scenarios will be answered by the NAHRS. No changes in treatment should be undertaken by a patient without discussion first with the patient's physician.
Q. Why did I develop this problem?
A. I have no family history of hair loss. Alopecia areata is considered to be an autoimmune disease. In alopecia areata, this means that immune system cells called white blood cells attack hair follicles. Hair fibers are shed and the hair follicle/hair fiber growth process is slowed down. Genetic factors may be important in disease susceptibility and severity but overall, scientists do not know exactly why the immune system attacks hair follicles in some people. In those who are genetically predisposed, it is possible some type of trigger, such as something in the person's environment or a virus, triggers the attack on the hair follicle.
Q. Do I need to have blood tests or X-rays done to determine if there are internal problems too?
A. Alopecia areata may occur more commonly in people who have other autoimmune diseases such as thyroiditis, Addison's disease, and pernicious anemia (Vitamin B-12 deficiency). Therefore, it is important your doctor take a careful medical history and obtain any necessary blood tests based on your medical history and physical examination.
Q. I've been told no treatment effects the natural course of this disorder. Is that true?
A. There is no "cure" for alopecia areata and in the United States there are no specific drugs which are approved specifically for the treatment of this disease. There are however, medications which are commonly prescribed to promote hair growth or to reduce the inflammatory (autoimmune) reaction around hair follicles. Your dermatologist will be familiar with these medications and how to use them in the management of alopecia areata.
Q. My child is only 5 years old and has alopecia totalis. Is he likely to regrow his hair?
A. This is a difficult question to answer as the course of the disease varies from person to person. Your child may regrow his hair spontaneously and never have another episode of hair loss again or he may regrow his hair only to lose it again later with a recurrent episode of alopecia areata. Some people with alopecia areata may never grow back their lost hair. Medical treatment of his alopecia totalis may help him regrow his hair but again one cannot guarantee the alopecia areata will not recur. From published research studies, it appears the outlook or prognosis for hair regrowth will be positive if the disease has been present for less than two years and your child does not have atopy. Atopy is the term used to describe three major diseases including asthma, allergic rhinitis (hay fever) and atopic dermatitis (eczema). Some, but not all, researchers have reported a worse prognosis if severe nail changes are also present. The nail changes which have been described include thinning of the nail plate and severe pitting and ridging.

Effects on body

Photo courtesy Derm Atlas

How can I cope with effects of this disease?

Living with hair loss can be difficult, 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. Nearly 2 percent of Americans 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 People Find More Information About Alopecia Areata?”

Another way to cope with the disease is to minimize its effects on your appearance. If you have extensive 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. It is often helpful if a parent informs teachers, coaches, and others that the child has alopecia areata, that it is not contagious, and that the child is healthy.

For women, attractive scarves can hide patchy hair loss, 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.

How can I participate in the NIH?

Q. I have alopecia areata and have heard that there is new NIH sponsored research on alopecia areata. Can you tell me how I can participate?

A. The National Institute of Health and the Institute of Arthritis and Musculoskeletal and Skin Diseases have recently funded a major project, the Alopecia Areata Registry. The Registry is a network of five centers who are in the process of identifying and registering patients with alopecia areata. Data and blood samples are being collected and will be made available to researchers studying not only the genetic basis of alopecia areata but also other aspects of this disease. The Registry is seeking U.S. residents with alopecia areata, alopecia totalis, or alopecia universalis diagnosed by a dermatologist. For more information about the Registry and to learn how to participate, log onto the Registry web site at www.alopeciaareataregistry.org.