Vitiligo Patient Handbook

Vitiligo Foundation A Handbook for Patients with Vitiligo
You have been told by your physician that you have Vitiligo. Like most patients, you have questions and concerns about the disease. Some of the most common questions are addressed below.

What is Vitiligo?
Will it Spread?
Can Vitiligo be Treated?
Is it Contagious?
Do I Have Cancer?
Will My Children Inherit it?
What Will Other People Think?
How Can I Help Myself?
Where Can I Find Out More About Vitiligo?

What is Vitiligo?
Vitiligo is a disease in which the skin loses pigment due to the destruction of melanocytes or pigment cells. Areas of the skin become white. The most common sites of pigment loss are body folds (such as the groin or armpits), around body openings and exposed areas like the face or hands. Vitiligo is common; in fact 1 to 2% of the general population has it. Its incidence is higher in people with thyroid conditions and some other metabolic diseases, but most people who have Vitiligo are in good health and suffer no symptoms other than areas of pigment loss. Medical researchers are not sure what causes Vitiligo. Some researchers think the body may develop an allergy to its pigment cells; others think that the cells may destroy themselves during the process of pigment production. Research on the cause is continuing.

Will it Spread?
Vitiligo may spread to other areas, but there is no way of predicting whether or where it will spread. In many cases, initial pigment loss will occur; then after several months, the number and size of the light areas become stable and may remain so for a long time. Episodes of pigment loss may appear again later on. Many vitiligo patients report that initial or later episodes of pigment loss followed by periods of physical or emotional stress, which seem to trigger depigmentation in those who are predisposed. Sometimes, depigmented areas may spontaneously repigment.

Can Vitiligo be Treated?
The symptoms of vitiligo can be treated. There are several new modes of treatment in use today. The most common is a combination of a drug called psoralen (applied to the skin or taken orally) and regulated doses of sunlight. Some clinics use psoralen and indoor ultraviolet light treatments. The psoralen treatment is not always successful, but many patients find that it is helpful in restoring some degree of pigmentation to areas of the skin with Vitiligo. In some cases, physicians use a different kind of medication to totally depigment the skin so the patient is an even color. Total depigmentation is tried, however, only in very severe cases of Vitiligo. Treatment for Vitiligo is given by dermatologists. You can discuss these treatment options further with your physician.

Is it Contagious?
Vitiligo is absolutely not a contagious disease.

Do I Have Cancer?
Vitiligo is not either a cancerous or precancerous condition. People with skin cancer sometimes develop Vitiligo; in many of these cases, Vitiligo seems to stop the cancer from spreading.

Will My Children Inherit it?
There seems to be a hereditary component to Vitiligo. In more than half the cases, there is a family history of Vitiligo or early graying of hair. Many patients do not realize that anyone in the family has had Vitiligo, either because they do not know that premature gray hair is a sign of Vitiligo or because the affected area is hidden by clothing. Your children have a somewhat higher probability of developing Vitiligo than do children from families with no history of the disease. However, that does not mean that your children will definitely inherit Vitiligo. In many cases of Vitiligo, there is no family history of the disorder. Many Vitiligo patients, on the other hand, do not have either children or grandchildren with symptoms of pigment loss.

What Will Other People Think?
Most patients find that their family, friends, and relatives react to Vitiligo with support and encouragement. Some people with highly visible Vitiligo are annoyed by questions or glances from strangers, especially small children. Vitiligo on the face and hands, especially if it is extensive, is often interpreted by strangers as scarring from a burn. Many patients report the most effective way to handle such annoyance is to react pleasantly and explain the disease briefly.

Going to the beach, or other situations requiring prolonged exposure to the sun, are particularly difficult for some people with Vitiligo. The areas affected by Vitiligo can burn, and Vitiligo normally hidden by clothing becomes visible. Also, the contrast with tanned skin makes areas without pigment more noticeable. Thus, sunscreens or clothing to cover the affected areas are useful.

Sometimes Vitiligo patients worry about the possibility that Vitiligo will interfere with the romantic, intimate side of life. Since our culture tends to overemphasize the importance of appearance in matters of the heart, this worry is certainly understandable. However, many times it is unnecessary.

Many adult Vitiligo patients are married and find that Vitiligo has not interfered with their sex lives, indicating that Vitiligo does not keep members of the opposite sex from finding one attractive. Basically, people value much more in a sexual partner than physical beauty. Personality and caring are the real essentials. Researchers have found that when Vitiligo patients do have sexual problems, it is usually because of their own anxieties. Their partners have not rejected them; however, because they fear rejection from their partners, the patient's fears may cause them to be reluctant lovers. It is important to discuss these fears and anxieties openly with your partner. By communicating the feelings of both, mistaken interpretations of behavior can be avoided.

If you feel good about yourself and seek relationships with people who value more than a superficial appearance, there is no reason for Vitiligo to interfere with your interactions with other people.

How Can I Help Myself?
If you find that you are embarrassed or concerned about Vitiligo, why not explore some of the new cosmetic products? Cosmetics are not "just for women"; nor are they only for the face. Anyone can wear them anywhere on their body. The newer over-the-counter cosmetics have many good qualities. They exist in a wide range of skin tones, many are waterproof, and many do not rub off. There are also special dermatological cosmetics that patients even with severe Vitiligo find useful. Effective use of cosmetics can provide a good "cover-up" that can minimize the visibility of Vitiligo.

People who feel good about themselves generally adjust well to Vitiligo Be aware of your most positive characteristics. It helps to take an inventory of your good traits — a good sense of humor, ability to care for another, easy disposition, intelligence, and many more characteristics. These are the traits which other people value. After all, Vitiligo does not erase humor, personality, and affection — only pigment!

Don't be afraid to ask your physician any questions you may have or to discuss your fears or worries. If you become very worried or feel depressed, psychological counseling can be of great assistance. A psychiatrist, psychologist, or social worker can help you overcome your concerns. Talking to other Vitiligo patients, in formal or informal support groups, can be helpful.

Where Can I Find Out More About Vitiligo?
In addition to speaking with your dermatologist, you can contact one of the several centers that specialize in Vitiligo treatment and research. They can send you additional information about the disease. Three such Vitiligo Treatment Centers are:

Howard University Hospital
Department of Dermatology
Washington, DC 20060

Yale University School of Medicine
Department of Dermatology
New Haven, CT 06510

University of Cincinnati School of Medicine
Department of Dermatology
Cincinnati, OH 45267-0592