FREQUENTLY ASKED QUESTIONS ABOUT VITILIGO ( FAQ )

What is vitiligo? Vitiligo is a relatively common skin disorder, in which white spots or patches appear on the skin. These spots are caused by destruction or weakening of the pigment cells in those areas, resulting in the pigment being destroyed or no longer produced. Many doctors and researchers believe that vitiligo is an autoimmune-related disorder. Although researchers are not exactly sure what causes the autoimmune response, more is being learned every year. In vitiligo, only the color of the skin is affected. The texture and other skin qualities remain normal.

What does vitiligo look like? Vitiligo appears as uneven white patches on the skin, that may vary from lighter tan to complete absence of pigment. Many people develop vitiligo bilaterally, in other words, if it appears on one elbow, it often appears on the other elbow. Researchers do not completely understand why this is. Others develop what is known as segmental vitiligo, where the patches develop in only one area or on only one side of the body.


What is an autoimmune disorder? An autoimmune disorder is any of a number of conditions in which a person's immune system reacts against the body's own organs or tissues, and the person's immune system produces antibodies to them. An autoimmune disorder is NOT an "immune deficiency". In the case of vitiligo, we believe that the immune system probably sees the person's own pigment cells as foreign bodies, and attacks them, destroying them or weakening them. Other examples of autoimmune disorders include thyroid disorders, alopecia areata, lupus, and pernicious anemia. What is a Melanocyte (Pigment Cell)? A Melanocyte is a specialized cell located in the skin, which produces melanin (pigment). Surprisingly, all humans have roughly the same number of pigment cells in their skin. Those with darker toned skin, have pigment cells that are able to store more melanin within them. In the diagram below, the cell with the tendrils, marked "I" is the melanocyte. The brown color within the cell is the melanin. The cell uses the tendrils to distribute the melanin evenly throughout the skin.


What is Melanin? Melanin is a dark brown pigment of skin and hair in animals, particularly vertebrates, derived from the amino acid tyrosine. It is synthesized by special cells called Melanocytes, which also store the melanin. What are the symptoms of vitiligo? People who develop vitiligo usually first notice white patches or spots (depigmentation) on their skin. The skin remains of normal texture, though some people experience itching in areas where depigmentation is occurring. The white patches are more obvious in sun-exposed areas, including the hands, feet, arms, legs face, and lips. Other common areas for white patches to appear are the armpits and groin and around the mouth, eyes, nostrils, navel, and genitals. Vitiligo generally appears in one of three patterns. In one pattern (focal pattern), the depigmentation is limited to one or only a few areas. Some people develop depigmented patches on only one side of their bodies (segmental vitiligo). For most people who have vitiligo, depigmentation occurs on different parts of the body, in a bilateral pattern (generalized vitiligo). In addition to white patches on the skin, some people with vitiligo may experience white hair growing in on the scalp, eyelashes, eyebrows, and beard. I have vitiligo patches on my underarms, my feet and my genitals. Is this common? For reasons we don't really understand yet, there are certain parts of the body, which are commonly affected in those who have vitiligo. The face, underarms, hands, wrists, fingers, feet, elbows, knees and genitals are among these areas. There are many theories about why such sensitive areas of the body seem to be commonly affected - the presence of many nerve endings, the bony nature, sweat glands, etc. How does vitiligo develop? The course and severity of pigment loss differ with each person. In many cases, vitiligo begins in a small area. Over time, other spots may appear, while existing spots may grow larger. Some people notice that their vitiligo may stay the same for years or even decades, and then suddenly new areas of depigmentation may occur. Occasionally, vitiligo patches will repigment spontaneously, all by themselves, with no treatment whatsoever. Many people with vitiligo do notice this happening at some point in their lives. Is depigmentation ever accompanied by itching? Some, though not all patients, do experience itching of the skin prior to or while depigmentation is occurring. No research or studies have suggested a reason for this. Will the vitiligo patches spread over time? Will they get larger? In many, but certainly not all cases, vitiligo does progress slowly over time, but there is really no way to tell whether your vitiligo will progress or not. It is a slow progressing condition however, and many patients report that they may go many years without new patches developing, and then may discover new patches appearing years later. Some people even report spots that spontaneously repigment, with no treatment at all. Use of new technologies however, may be able to arrest new spots in their development. What is segmental vitiligo? Some people develop vitiligo only in one or a few limited areas of their body. This is called segmental vitiligo. People with vitiligo can have a combination of segmental and generalized vitiligo. What is generalized vitiligo? Most people find that their vitiligo develops in a generalized way, most often with bilateral characteristics, meaning that if a vitiligo patch appears on one elbow, it often appears on the other elbow about the same time. Is vitiligo at all contagious? Vitiligo is NOT contagious. If it were, many more people in the world, including doctors who treat vitiligo and family members of those with vitiligo, would have the condition. There are many theories about what causes vitiligo, but many experts believe, and data supports the theory, that one must be genetically susceptible, in order to develop vitiligo. Where does the word "vitiligo" come from? It is believed that the word "vitiligo" comes from Latin. The first part of the word, "viti" is from the Latin word "vitium" meaning a mark or blemish. The suffix, "ligo" is a common Latin ending meaning to bind or cause. How do you pronounce the word "vitiligo"? Many people pronounce this word incorrectly the first time they see it. But to hear it correctly, say the words "Little I Go." Then replace the first "L" with a "V" - giving you "Vittle I Go." Run the words together and you have the correct pronunciation.

2. CAUSE AND EFFECT What causes vitiligo? There are many theories about what causes vitiligo, and no one is positively certain. However, many doctors and researchers believe that a genetic predisposition or susceptibility to vitiligo exists in most people who develop vitiligo. Vitiligo may result from a number of factors -- autoimmune, oxidative stress (excess of hydrogen peroxide), neurotrophic (interaction of melanocytes and the nervous system), and toxic (substances formed as a part of normal melanin production actually being toxic to melanocytes) hypotheses have been advanced. The mechanism involves progressive destruction of selected melanocytes, probably by cytotoxic T-cell lymphocytes. Many believe that vitiligo is a type of autoimmune disorder, in which the body's immune system sees the pigment cells in the skin as foreign bodies, and attacks them. The basis for this autoimmune disorder is believed by many to be genetic. Stress, traumatic events, injury, or severe sunburns, may trigger or exacerbate vitiligo in those who are susceptible, though this has not been substantiated. Other theories include the possibility that an abnormally functioning nervous system may produce a substance that injures melanocytes. Some believe that melanocytes in vitiligo patients may self-destruct, releasing toxic byproducts that then destroy other pigment cells. Another theory suggests that vitiligo is entirely genetic, and that there is a defect in the melanocytes that makes them more susceptible to injury. We know that some cases of vitiligo arise from exposure to certain chemicals, for example, phenols used in photography. Surgery wounds or injuries to the skin have also been known to result in vitiligo, which can spread. The question is, are those people susceptible to vitiligo to begin with. Many experts say yes. Finally, there are alternative theories about vitiligo that suggest diet, nutrition, and digestive disorders may play a role in the destruction of melanocytes. Some believe that internal pathogens within the digestive tract, such as yeast proliferation, might relate to vitiligo. What is oxidative stress? This is one theory about what may cause or contribute to the onset or exacerbation of vitiligo. Oxidative stress is an over-accumulation of hydrogen peroxide in the skin. Every person develops hydrogen peroxide in the skin, as a result of natural biological processes. An enzyme called "catalase" normally breaks down the hydrogen peroxide in the skin into water and oxygen. However, some people with vitiligo may have a problem manufacturing, using or delivering catalase to the skin. Is it true that genetics may play a part in vitiligo? Most experts believe that there is a genetic base to vitiligo which leads to susceptibility. In about 12% of families where a person has vitiligo, the condition is seen in another family member. Though no one else in your family may show signs of vitiligo, it is still possible that it is passed on genetically. The most likely reason for this is that more than one gene is responsible for the development of vitiligo. In fact, a combination of genes that may prove to be involved. In some cases, an independent stimulus may cause the condition to onset.

Genes are inherited in a random fashion from both parents, so only sometimes will the genes which make a person susceptible to vitiligo come together in the same person. Those who do not inherit a complete set of the abnormal genes are unlikely to develop the disorder. Those people who do inherit a complete set may also need some other factor to trigger the vitiligo patches to appear. In this way vitiligo genes can pass through several generations of a family without anyone actually developing vitiligo. Currently, researchers are studying the genetic aspects of vitiligo, using gene-sequencing computers and the mapping of the human genome to determine how genetic therapy and technology might help treat or arrest vitiligo. What is genetic susceptibility? This is the theory that the susceptibility or predisposition to vitiligo is genetic, and that some defect in the genetic structure, makes people more susceptible to vitiligo. While we do see vitiligo in more than one family member about 20% of the time, about 80% of patients report no other family members with vitiligo. Many experts agree that not everyone who is susceptible to vitiligo will necessarily develop it. Recent genetic studies, which ran the DNA of hundreds of people with vitiligo through gene sequencing computers, have produced important information about the enzyme operations in the bodies of those with vitiligo, which may help researchers better understand how to treat the underlying cause of vitiligo. As with all genes, people may carry the defect that causes vitiligo, and even pass it on to their children, without ever developing vitiligo themselves. Thus other factors, including environmental and personality factors, may play a role in the onset (beginning) of vitiligo. Is it true that exposure to certain chemicals can cause vitiligo? Some chemicals, particularly photography chemicals such as Phenols, can trigger vitiligo in those who are susceptible. Phenols can also be found in many types of hair colorings, household stains, and similar products. There are other industrial chemicals and substances which may also trigger the onset of vitiligo. Are there things that a person with vitiligo should avoid? In addition to the phenol type chemicals listed in the previous paragraph, there are other things and activities which people with vitiligo should avoid. Unfortunately, the list of activities, products and chemicals to avoid varies, depending on who you talk to. Our Main Message Board has numerous topics about this subject, however, we will be updating this section shortly, with a list of some of the things many people agree may make vitiligo worse. Are there any other symptoms? Will Vitiligo lead to other conditions or diseases? Other than the white patches of skin, there are no other physical symptoms of vitiligo. As a secondary effect, vitiligo patches will tend to sunburn more easily, and sunscreen is often recommended. Though some websites suggest eye color and vision may be affected by vitiligo, experts indicate that any effect on eye color or the retinal pigment is extremely rare, and any impairment of vision, even rarer. Are there other conditions related to vitiligo? Vitiligo in of itself does not appear to "lead" to other conditions. However, there are other autoimmune-related conditions, which may arise in vitiligo patients, and that may even arise from the same genetic disorder that results in vitiligo. Thyroid disorders (especially hypothyroidism) are quite common in those with vitiligo, and many doctors feel treating thyroid disorders is important in treating vitiligo. Other related autoimmune conditions are much rarer, but include alopecia areata, pernicious anemia, lupus, and occasionally diabetes. To worry that these other conditions will arise is unwarranted, as they are not very common. But understanding these other conditions, and knowing about their symptoms, may be wise. Nevertheless, most people with vitiligo have no other autoimmune disorders. How is thyroid function related to vitiligo? Thyroid disorders are extremely common in every ethnic and racial group on the planet. The thyroid is a small, butterfly-shaped gland just below the Adam's apple. This gland plays an important role in controlling the body's metabolism, that is, how the body functions. It does this by producing thyroid hormones (T4 and T3), chemicals that travel through the blood to every part of the body. Thyroid hormones tell the body how fast to work and use energy. Because vitiligo may well be related to numerous functions within the body, a properly functioning thyroid (or sufficient supplemental hormone) could be important in treating vitiligo.


What is alopecia areata? Alopecia areata is a fairly common condition (ranking with vitiligo) that results in the loss of hair on the scalp and elsewhere. It usually starts with one or more small, round, smooth patches. It occurs in males and females of all ages, but onset most often occurs in childhood. In alopecia areata, the affected hair follicles become very small, drastically slow down production, and grow no hair visible above the surface for months or years. It is not the same as male pattern baldness, which is a much more common genetic condition in males. Current research suggests that something triggers the immune system to suppress the hair follicle. Recent research indicates that some persons have genetic markers that may increase their susceptibility to develop alopecia areata. Some believe alopecia may be one of vitiligo's closest relatives, because of the autoimmune nature of the condition. However, only a very small percentage of people with vitiligo also develop alopecia areata. Alopecia areata may result in symptoms (skin pigment loss) which appear similar to vitiligo, and some vitiligo patients are initially diagnosed with alopecia. However, proper medical examination can determine which condition is present. Are there treatments I should not use if I am pregnant? There are definitely some medications which will pass through the placenta to your fetus. Ultraviolet light may also pose some risk. If you are pregnant, you should definitely consult with both your dermatologist and your obstetrician regarding any risks to the various types of treatments available for vitiligo. If I am pregnant and have vitiligo, will my child develop vitiligo? Most people with vitiligo have no relatives with vitiligo. However, enough people with vitiligo do have parents, or siblings or children who develop vitiligo that a genetic factor does appear to exist. Am I at greater risk for skin cancer because of my vitiligo? While there is some disagreement in the medical community, many vitiligo experts believe there is not an increased risk for skin cancer in vitiligo patients. According to Pearl Grimes, MD, a leading medical expert on vitiligo, "the current data show no increase in skin cancer in vitiligo patients, both within the vitiligo patches, or the normal skin...either way." Some in the medical profession believe there may be no increased risk in the case of melanomas, but that there may be a slightly elevated risk for some types of carcinomas. The medical community is still investigating this question. Additionally, is PUVA or UVB associated with an increase in skin cancer in areas of vitiligo? Dr. Grimes says no. In psoriasis literature and articles, we do see an increase in skin cancer for those treating with UV light. But this is NOT the case for vitiligo patients. In the case of Narrow Band UVB itself, many suggest that UVB is less carcinogenic. More research and data are required, since UVB and narrow band UVB are so new. But many doctors and researchers feel that Narrow Band UVB is safer than other light options. 3. PEOPLE AND HISTORY Who is affected by vitiligo? About 1 to 2 percent of the world's population, or from 50 to 100 million people, have vitiligo. In the United States, 2 to 5 million people have the disorder. It is suspected that some countries may have higher incidents of vitiligo, for various genetic and societal reasons. Ninety-five percent of people who have vitiligo develop it before their 40th birthday, most between the ages of 10 and 30. The disorder affects all races, ethnicities and both sexes equally, which suggests that it truly is a human problem. Even on remote islands where the population is completely homogenous, we see instances of vitiligo. People with certain autoimmune disorders do seem to be more likely to develop vitiligo, although the opposite is not true. These autoimmune disorders include hyperthyroidism (an overactive or underactive thyroid gland), adrenocortical insufficiency (the adrenal gland does not produce enough of the hormone called corticosteroid) , alopecia areata (patches of baldness), and pernicious anemia (a low level of red blood cells caused by failure of the body to absorb vitamin B12). How many people have vitiligo? Vitiligo is a relatively common disease, with about 1 to 2% of the world's population affected, which means anywhere from 50 to 100 million people are affected. 100 million people is roughly the population of California, New York, Illinois, Florida and Texas combined. How long has vitiligo existed? We believe that vitiligo has existed at least as long as the recorded history of man, and probably before that, since similar conditions are seen in many other animals. References to vitiligo patches are mentioned in the bible, and in ancient Chinese and Greek writings. 4. DOCTORS AND TREATMENTS How is vitiligo diagnosed? If a doctor suspects that a person has vitiligo, he or she usually begins by asking the person about his or her medical history. Important factors in a person's medical history are a family history of vitiligo; a rash, sunburn, or other skin trauma at the site of vitiligo 2 to 3 months before depigmentation started; stress or physical illness; and premature graying of the hair (before age 35). In addition, the doctor will need to know whether the patient or anyone in the patient's family has had any autoimmune disorders and whether the patient is very sensitive to the sun. The doctor will then examine the patient to rule out other medical problems. The doctor may take a small sample (biopsy) of the affected skin. He or she may also take a blood sample to check the blood-cell count and thyroid function. The doctor may examine your skin with a special black light called a Woods Light, which illuminates areas of vitiligo. This also helps the doctor rule out other conditions. For some patients, the doctor may recommend an eye examination to check for uveitis (inflammation of part of the eye). A blood test to look for the presence of antinuclear antibodies (a type of autoantibody) may also be done. This test helps determine if the patient has any other autoimmune conditions. I was told vitiligo could not be treated. Is that correct? Vitiligo is difficult to treat - that much is true. But in the past few years, new treatments have been developed that are working better. And there are more options. Vitiligo can be treated, though results can take time. Even though treatment can take from 6 months up to two years or longer to see results, there are many new treatments available. Where you don't see good results with one treatment, another may work better. I was told that vitiligo was just cosmetic. Is that right? No. While it's true that vitiligo is not fatal, and that it has no other physical symptoms other than white patches, the emotional and social effects of vitiligo on people are well-documented. What treatment options are available? Today, there is more research and more treatments options available than ever before. In addition to the traditional therapies such as the PUVA system and steroid creams, new technologies have been developed, including narrow-band UVB, Pseudocatalase cream, excimer lasers, skin grafting and pigment transplantation, topical psoralens, and potentially, the use of immunomodulators. There is no one treatment that works for everyone. Different therapies work better for different people. While one person may respond extremely well to PUVA, another may respond better to narrow band UVB or immunomodulators. For this reason, many vitiligo experts will try different therapies on a patient until they find what works best for that person. How long does it take to treat vitiligo? When should I expect results? Results from the treatments available vary by person. Some people will see results from treatment within 3 to 6 months. Others may not see results for 8 months. With immunomodulators, some people are reporting some repigmentation with 4 to 8 weeks. For others it is taking longer. The rule of thumb, is that you will need to allow at least 3 to 6 months before you begin to see results from ANY treatment. Additionally, you should expect to treat for up to two years or longer, in order to see good results. If you try a treatment for 3 months, and then quit because you saw no results, you did not wait long enough. Are there any new treatments being worked on? More research and development than ever before is being conducted about vitiligo and treating it. Even the mapping of the human genome, and the advent of gene sequencing computers, may show potential. What is PUVA? PUVA is one of the oldest methods used for treating vitiligo. Oral PUVA therapy is used for people with more extensive vitiligo (affecting greater than 20 percent of the body) or for people who do not respond to topical PUVA therapy. Oral psoralen is not recommended for children under 10 years of age because of an increased risk of damage to the eyes, such as cataracts. For oral PUVA therapy, the patient takes a prescribed dose of psoralen by mouth about 2 hours before exposure to artificial UVA light or sunlight. The doctor adjusts the dose of light until the skin areas being treated become pink. Treatments are usually given two or three times a week, but never 2 days in a row. The person must avoid sunlight after treatment for 12-24 hours, and must wear wrap around sunglasses to protect their eyes. The most common side effects of PUVA are sunburn, and stomach upset due to the psoralen pills. Many patients find that eating something starchy before taking psoralen pills, greatly reduces or eliminates an stomach upset. What is PUVA-SOL? For patients who cannot go to a PUVA facility, the doctor may prescribe psoralen to be used with natural sunlight exposure. The doctor will give the patient careful instructions on carrying out treatment at home and monitor the patient during scheduled checkups. What is a topical steroid cream or ointment? Steroid creams come in different strengths and include such brand names as Elocon, Clobetasol, Ultravate, Cyclocort, Descort, Pramasone, and Tridesilon. If the suffix of a drug ends in "-ate," "-one" or the word "cort" is in it, it most likely contains a steroid or steroid derivative. Other names may be used though. Although still not completely understood, steroids may be helpful in repigmenting the skin, particularly if started early in the condition and where only a few patches or spots need to be treated. Corticosteroids are a group of drugs similar to the hormones produced by the adrenal glands (such as cortisone). Doctors often prescribe a mild topical corticosteroid cream for children under 10 years old and a stronger one for adults. Patients must apply the cream to the white patches on their skin for at least 3 months before seeing any results. It is the simplest and safest treatment but not as effective as some other treatments. Treatment must be carefully monitored, as steroids can thin and damage the skin if not carefully watched. The doctor will closely monitor the patient for side effects such as skin shrinkage and skin striae (stretch marks). Because of the side effects, steroid creams should not be used for extended periods of time. What is a steroid? Steroid is the Greek word for hormone. Some steroids occur naturally in the body, such as cortisol, sex hormones, bile acids. Cortisol is essential for all life. There are many kinds of steroids, Cortico, Glutico, Sex Hormones and Anabolic steroids. Anabolic steroids are illegal. When synthetic steroid hormones are prescribed and used correctly, they can be helpful, and their side-effects can be reduced. But when safeguards are ignored, damage can result. What is topical psoralen therapy? Topical psoralen photochemotherapy often is used for people with a small number of depigmented patches (affecting less than 20 percent of the body). It is also used for children 2 years old and older who have localized patches of vitiligo. Treatments are done in a doctor's office under artificial UVA light once or twice a week. The doctor or nurse applies a thin coat of psoralen to the patient's depigmented patches about 30 minutes before UVA light exposure. The patient is then exposed to an amount of UVA light that turns the affected area pink. The doctor usually increases the dose of UVA light slowly over many weeks. Eventually, the pink areas fade and a more normal skin color appears. Most patients wash off any topical residue after treatment. The two major potential side effects of topical psoralen therapy are severe sunburn and blistering and occasionally too much repigmentation or darkening of the treated area or the normal skin surrounding the vitiligo (hyperpigmentation). Hyperpigmentation is usually a temporary problem and eventually disappears when treatment is stopped. What is Narrow Band UVB? Narrow Band Ultra Violet B Light is a relatively new technology on the vitiligo front. Narrow Band UVB light panels and cabinets solve the problems of over-exposure to ultraviolet by maximizing delivery of narrow-band UVB radiation (in the 311-312 nanometer range) while minimizing exposure to superfluous UV radiation. This narrow band allows patients to receive photo-therapy treatments with less risk of severe burning or pathogenic exposure to UV in harmful ranges. It also avoids the adverse side effects of the psoralens used in conventional PUVA therapy, since UVB treatment does not require that any medications be taken. These benefits have made Narrow Band UVB systems increasingly popular with vitiligo patients and their doctors. Even home systems are available, though home units should always be used under the care and monitoring of a physician.

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