The NVFI (National Vitiligo Foundation) is based here in Cincinnati so I guess in some ways I’m spoiled as I have access to people with Vitiligo and people who support those that have the disease. Most of the text below was borrowed from the NVFI website with permission.
Site visitors not familiar with Vitiligo will benefit from reading the info below and visiting the www.nvfi.org website.
What is Vitiligo?
Vitiligo is a disease in which the skin loses pigment due to the destruction of pigment cells, which are called melanocytes. 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, with 0.5-1% of the general population having 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 entirely sure what causes vitiligo, although it is now known that a combination of genetic, immunologic (your body’s ability to attack foreign materials), and environmental factors is involved in most cases. This means that certain people are predisposed (have a greater tendency) to develop vitiligo upon exposure to the right trigger (such as stress, illness, or injury).
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 individuals with vitiligo report that initial or later episodes of pigment loss followed periods of physical or emotional stress, which seem to trigger depigmentation in those who are predisposed. Sometimes depigmented areas may spontaneously repigment, although this is rare.
Can Vitiligo be Treated?
The symptoms of vitiligo can be treated. There are two basic approaches: try to restore the normal pigment (repigmentation therapy), or try to destroy the remaining pigment cells (depigmentation therapy). For repigmentation therapy, the most common approaches are use of topical hydrocortisone-type compounds (immunomodulators and immunosupressants), narrow-band UVB phototherapy, and excimer laser phototherapy. These approaches have largely replaced the use of PUVA (psoralen plus UVA light). For depigmentation therapy, monobenzylether of hydroquinone (Benoquin) is applied to the skin. Treatment for vitiligo should be given by a dermatologist familiar with the disease.
Is it Contagious?
Vitiligo is absolutely not a contagious disease.
Do I Have Cancer?
Vitiligo is not a cancerous or pre-cancerous condition.
Will My Children Inherit it?
Possibly. There is a hereditary component to vitiligo but, because several different genes are involved in the disease, it is not straightforward to predict which children will or will not develop it. If other individuals in your family also have vitiligo, your children have a somewhat higher probability of developing it than do children from families with no history of the disease. However, that does not mean that your children will definitely inherit vitiligo. For many individuals with the disease, there is no family history of the disorder and their children or grandchildren have no symptoms of pigment loss.
What Will Other People Think?
Most people with vitiligo find that their family, friends, and relatives react to the disease with support and encouragement. Some people with highly visible vitiligo may be annoyed by questions or glances from strangers, especially from curious small children. Vitiligo on the face and hands, especially if it is extensive, is often interpreted by strangers as scarring from a burn. Generally 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 depigmented areas of skin can burn, and white spots normally hidden by clothing become visible to others. Also, the contrast with tanned skin makes areas without pigment more noticeable. Sunscreen should be used to prevent burning, and a choice of clothing that covers the affected areas may be helpful.
Sometimes individuals with Vitiligo worry about their pigment loss interfering 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. An open discussion with your partner should help reduce any concerns they might have.
Many adults with Vitiligo are married and find that the disease has not interfered with their sex lives, indicating that vitiligo does not keep members of the opposite sex from finding a person attractive. Basically, people value much more in a sexual partner than just 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, but because they fear rejection from their partners, their fears 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 people, 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 why vitiligo needs to interfere with your interactions with other people.
How Can I Help Myself?
You first need to choose whether or not to treat your vitiligo. As mentioned above, there are a variety of new approaches that can provide significant repigmentation. Alternatively, if your disease is advanced and most of your body is covered with white spots, you may want to explore depigmentation to even-out your skin tone. In either case, you need to be patient and perservant because treatment may take several months before you see substantial changes.
If you chose not to treat your vitiligo, or are undergoing treatment for it, and are embarrassed or concerned about the appearance of your white spots, you may want to 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. Effective use of cosmetics can provide a good “cover-up” that can minimize the visibility of your depigmented areas.
People with vitiligo who feel good about themselves generally adjust well to their disease, and do not consider themselves a victim of it. Be aware of your most positive characteristics. It helps to take an inventory of your good traits – a sense of humor, ability to care for another, easy disposition, intelligence – as these are what other people value. Vitiligo only destroys your pigment; you’re ultimately responsible for how you choose to look at your pigment loss and for how you choose to react to other people when they are curious about you.
Don’t be afraid to ask your physician any questions you 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. As well, talking to other people with vitiligo in formal or informal support groups can be helpful.
Read the full article at http://nvfi.org/pages/info_patient_handbook.php