Facts

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Coping Skills

The change in appearance caused by vitiligo can affect your emotional and psychological well-being. You may experience emotional stress, particularly if vitiligo develops on visible areas of you body, such as your face, hands, arms or feet. You may feel embarrassed, ashamed, depressed or worried about how others will react. Young people, who are often particularly concerned about their appearance, can be devastated by widespread vitiligo.

Certain strategies may help you cope with vitiligo. Consider these tips:

  • Make a good connection. Find a doctor who's knowledgeable about vitiligo. A dermatologist is a doctor who specializes in the care of skin.
  • Learn all about it. Find out as much as you can about vitiligo and its treatment options so you can participate in making important decisions about your health care.
  • Communicate your feelings. Let your doctor know if you're feeling depressed. He or she can refer you to mental health professionals who specialize in helping people deal with depression.
  • Talk with others. Ask your doctor about support groups in your area for people who have vitiligo. Take your loved ones along with you.
  • Confide in loved ones. Seek understanding and support from your family and friends.

Humbled By Smiles Of Joy and Pain

By Dr. Brickell Quaries
Clinical Psychologist - AVRF Medical Advisory Board Member

Last June I had one of the most humbling experiences of my life. I attended the AVRF Annual Convention in Clearwater, Florida. It was my first time in attendance and an experience I have not forgotten. It is one thing to hear from Stella about the misfortunes and tribulations one suffers from having vitiligo. But it is another thing to witness it and see its’ effects.

Overall the weekend was wonderful. For the adults it provided an opportunity to gather the latest research data on, and treatment options for vitiligo. It also gave them a chance to build supportive relationships, and to offer insights to others about their personal experiences with vitiligo. For the kids, of whom I spent most of the weekend with, it was all about having fun. And this they did. It was great seeing the children being celebrated for just being themselves. They seemed truly excited about being together again and meeting new friends. The weekend provided them with several moments of escape from the prolonged stares, disrespectful comments, and at times down-right rude and insulting demeanors of the uneducated [about vitiligo]. On the other hand it also made for educational opportunities for people with questions about vitiligo. But what a cross to bear, having to explain your humanity to others just to feel accepted! Life for one with vitiligo is hard, especially given the image conscious society we live in.

Although there were smiles of joy on the kid’s faces, there was also an underlying sadness evident at times. A sadness that seemed in silence to say “Why me”. What is one to do when he/she has minimal to no control over his/her worse secret being exposed? The daily vulnerability experienced by individuals, especially kids, with vitiligo is unimaginable, and at times seemed overwhelming. It takes a tremendous amount of bravery and strength to face society in such a vulnerable state.

By embracing diversity and individuals and a society knowledgeable about vitiligo we can move from discrimination to acceptance-from hate to love. As a member of the medical advisory board I hope to shed light on the emotional and psychological effects of vitiligo, and identify potential individual and family resiliency factors that help to make having vitiligo more manageable.

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Self Care & Sun Safety

Certain self-care tactics may help you care for your skin and improve its appearance:

  • Protect your skin. If you have vitiligo, particularly if you have fair skin, use sunscreen to protect your skin from the sun's harmful rays. Sunscreen helps protect your skin from sunburn and long-term damage. Sunscreen also minimizes tanning, which makes the contrast between normal and depigmented skin less noticeable.
  • Conceal imperfections. Cosmetics that cover the white patches on your skin may improve your appearance and help you feel better about yourself. These cosmetic products may be particularly effective if you have vitiligo that's limited to exposed areas of your body. You may need to experiment with several brands of concealing cosmetics, such as Dermablend or Chromelin, before finding a product that works best for you.

MORE ON THE SUBJECT OF VITILIGO, SUN AND SKIN

A commentary by Professor KU Schallreuter MD PhD 
Clinical Director of the Institute for Pigmentary Disorders in association with E.M. Arndt University of Greifswald/Germany and University of Bradford/UK

WHAT IS VITILIGO?

This seems like a redundant question. However, it seems important to recognise that vitiligo is a disease according to the World Health Organization.

VITILIGO IS NEITHER A CONDITION NOR A SYMPTOM

The characteristics of this disease are the acquired sudden loss of the inherited skin colour. Despite its long recognition, the cause of this disease is still unknown. The loss of the skin colour yields white patches of various sizes, which can be localised anywhere on the body. The disease affects all races, men and women and all age groups. Approximately 1 in 200 of the world population develops vitiligo. The affected individual shows often-severe disfigurement,
particularly when the face and the hands are involved.

However, not all white skin patches are vitiligo. There are other conditions and diseases that are associated with white skin. A long time ago the term leucoderma has been introduced. This word originates from the Greek language and means white skin. Clearly it seems mandatory to make the correct diagnose. This can be done by Wood’s light. Vitiligo shows a very characteristic fluorescence under this condition which is absent in other leucodermas (Schallreuter et al, Science (1994))

SUTON NEVUS (HALO-NEVUS) IS NOT VITILIGO

Leukodermas of other origin are for example the Sutton Nevus also called Halo-Nevus. Despite both vitiligo and Sutton nevus can occur together at the skin of the same individual, it has been shown that these are two very different diseases (Schallreuter KU et al Arch Dermatol Res (2004) Future work needs to show why both vitiligo and Halo-Nevi frequently occur together.

SKIN COLOUR AND SUN PROTECTION

For decades it was believed that skin colour with its pigment (melanin) content fosters sun protection. However, the sun protection factor (SPF) is only between 2-3 for the brown / black melanin (eumelanin), while the red pheomelanin hardly protects at all, it is even photoactive and generates reactive oxygen species (ROS) (Chedeckel MR and Zeise L, Lipids (1998, Johnson BE et al Nat
New Biol (1972)). It is becoming evident that besides melanin formation many other mechanisms and factors are in place to defend the human body against environmental reactive oxygen species (ROS) formation (Schallreuter KU and Wood JM Photobiology (2001)). ROS can also be generated by ultraviolet light directly inducing a plethora of signalling and defence mechanisms.

In vitiligo patches the pigment is mostly completely absent, but not all individuals suffer from sunburn despite sun exposure (Schallreuter KU et al, Dermatology (2002)).

Moreover, it has been documented at least in 2 major studies that vitiligo per se does not necessarily coincide with increased sun sensitivity (Calanchini-Postizzi E and Frenk E Dermatologica ( 1987); Schallreuter KU et al (2002))

SKIN AGING AND VITILIGO

Interestingly, the skin of vitiligo sufferers does not age with the same speed compared to age and sex matched healthy people who do not have vitiligo (Schallreuter KU et al (2002)). The results stem from a clinical study of patients with vitiligo who did not avoid sun exposure completely. Hence, it would be of great value to understand this phenomenon. This observation clearly indicates
that some other protective mechanisms must be in place to yield this result.

However, it is also beyond any doubt that excessive sun exposure over time can induce non melanoma skin cancer (NMSC) in general in susceptible individuals.

The development depends on the genetic background and on the accumulation of sun exposure times / sunburns over time. In this context it is noteworthy that fair skin people who always burn and never tan are much more prone to develop skin cancer compared to good tanners and dark skin coloured individuals. But
there are also exceptions. Even dark skin people can occasionally

VITILIGO AND MELANOMA

Malignant Melanoma (MM) is another skin cancer which can be very dangerous if not recognised early. There are many reports linking this malignancy with altitudes and excessive periodic sun exposure.

People with very fair skin (those who never tan or only very slightly) do have a higher risk to develop melanoma compared to dark skinpeople at any body site regardless of sun exposure or not. These tumours can develop in existing moles but they can also arise totally new as pigmented as well as non-pigmented tumours. Early recognition and excision are important for the outcome.

The observation that melanoma is more frequent in patients with vitiligo originates from a study which included 623 Caucasian patients with melanoma of the Oncology Clinic at the Department of Dermatology at the University of Hamburg/Germany (Schallreuter KU et al, Dermatologica (1991)).

In this study 11/623 patients with melanoma had a true vitiligo long before their melanoma was diagnosed. Considering that 1 in 200 has vitiligo and 1 in 12,000 develops melanoma, these results suggested a significantly higher risk to develop melanoma for patients with vitiligo and fair skin (Schallreuter KU et al, Dermatologica (1991)).

In our Institute for Pigmentary Disorders we have indeed found in 2 Caucasian patients with vitiligo melanoma in a patient group of 1800 Caucasian patients with vitiligo supporting the above findings (Schallreuter KU, unpublished results).

Based on the above results the take home message and recommendation is that patients who have vitiligo should undergo an annual total body examination at their Dermatologists in order to recognise a possible melanoma as early as possible.

MELANOMA ASSOCIATED LEUCODERMA

Some individuals with melanoma develop patches of white skin in the vicinity of their melanoma or after their tumour had been excised. In this context it seems important that these white patches are not vitiligo. This skin shows a very different molecular biology and biochemistry compared to true vitiligo (Kothari, S PhD Thesis U of Bradford 2005). Therefore the term melanoma associated
leucoderma seems more appropriate as already suggested earlier by the late Fitzpatrick.

Are white skin patches associated with melanoma beneficial for the outcome?

The development of white patches anywhere on the skin in association with melanoma was interpreted to be a beneficial sign in the outcome for survival time. There is still an ongoing debate whether the development of such leucoderma associated with melanoma is of true value for the individual’s outcome or not (Lerner AB, Nordlund JJ Arch Dermatol (1977); Nordlund JJ, Lerner AB Arch Dermatol (1979); Nordlund JJ et al J Am Acad Dermatol (1983)). Thisauthor feels that there is at the present time not enough evidence to support this statement. Larger patient groups are needed in order to conclude. Therefore, it is simply not correct to advise patients with vitiligo that they have a decreased risk to develop melanoma and that they are well protected against this tumour.

The development depends on the genetic background and on the accumulation of sun exposure times / sunburns over time. In this context it is noteworthy that fair skin people who always burn and never tan are much more prone to develop skin cancer compared to good tanners and dark skin coloured individuals. But there are also exceptions. Even dark skin people can occasionally be very sun sensitive.

VITILIGO AND SKIN CANCER

The result of two major studies showed that patients with vitiligo do not have a higher risk to develop sun induced skin cancer (Calanchini-Postizzi E and Frenk E (1987) , Schallreuter KU et al (2002)).

In the recent past an issue was put forward that PUVA therapy which is a frequently used treatment modality for vitiligo could be of potential risk to enhance the risk of skin cancer and their precursors (actinic keratosis) in these patients (Halder RM et al Arch Dermatol(1995)). Considering the amount of rays, which these individuals receive, it seemed reasonable to question the possible side effects.

However, until now there is no documentation in the literature about a true coincidence. (Westerhof W and Schallreuter KU Clin Exp Dermatol (1997)). A recent publication by Grimes states that there is also no enhanced risk after the use of narrowband UVB exposure which is a treatment modality utilised as mono therapy with increasing doses 2-3x per week in adults and even in children (Grimes P, JAMA ( 2005)).

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Frequently Asked Questions

What is Vitiligo?

Vitiligo is an acquired skin disorder characterized clinically by totally white macules, or "spots," and microscopically by the total absence of pigment producing cells in the skin called melanocytes.

Who Gets Vitiligo?

Vitiligo appears to affect at least 1% to 2% of the population, irrespective of sex, race, or age. Series have been reported from across the globe. The more dark skinned a person is, the more their vitiligo stands out, because of the contrast between affected and unaffected areas of skin. This may account for the apparent higher prevalence of vitiligo in some countries with darker-skinned populations. Vitiligo has become a marked social stigma in countries such as India, where opportunities for social advancement or marriage among affected individuals are severely limited even today.

In half of all vitiligo cases, onset occurs between the ages of 10 and 30. There are a few reported cases of vitiligo present at birth. Onset in old age also rarely occurs. Over 30% of affected individuals may report a positive family history. Up to four loci are now considered responsible for vitiligo. Vitiligo in identical twins has been reported. The risk for children of affected individuals is unknown, but may be less than 10%. People from families with an increased prevalence of thyroid disease, diabetes mellitus, and vitiligo appear to be at increased risk for development of vitiligo.

Both predisposing (genetic) and precipitating (environmental) factors contribute to vitiligo. Many patients attribute the onset of their vitiligo to physical trauma, illness, or emotional stress. Onset following the death of a relative or after severe physical injury is often mentioned. Even sunburn reaction may precipitate vitiligo.

White Vitiligo Spots

The typical vitiligo macule is chalk white in color, has convex margins (as if the white areas were flowing into normally pigmented skin), is 5mm to 5cm or more in diameter, and is round, oval, or elongated in shape. Linear or artifactual macules represent the isomorphic or "Koebner" phenomenon, following repeated trauma or pressure on the elbows, knees, and bony prominences. The disease progresses by gradual enlargement of individual macules and the development of new white spots on various parts of the body.

Where Does Vitiligo Appear On The Body?

Vitiligo can be categorized as one of three types, based on the pattern of depigmentation.

The most common type is generalized vitiligo, in which there is widespread distribution of white macules, often in a remarkably symmetrical array.
The focal type is characterized by one or more macules on a single site; in some cases, this may be an early evolutionary stage of one of the other forms of the disease. Typical macules occur in the fingers, elbows, knees, lower back, and genital area. Extensive generalized vitiligo may leave only a few normally pigmented macules, a form of the disease referred to as "vitiligo universalis".
The segmental type, which is uncommon, is characterized by one of several macules on one hand or one side of the body. This type is not usually associated with vitiligo macules in other parts of the body, and new vitiligo spots do not appear.

Not All White Spots Are Vitiligo

The diagnosis of vitiligo can usually be made on clinical examination of a patient with progressive, acquired, chalk-white macules in typical sites. Few conditions are as patterned and symmetrical as vitiligo. Sometimes the spots match on both extremities in a mirror-image.

Woods light examination is required to detect all the spots, especially in fair skinned persons, include:

  • Lupus erythematosus (atypical distribution, positive immunofluorescence, serologic studies)
  • Pityriasis alba (slight scaling, fuzzy margins, off-white color)
  • Piebaldism (congenital, white forelock, stable, hyperpigmented macules in the center of white spots, different distribution than vitiligo)
  • Tinea versicolor (fine scales with greenish yellow fluorescence under Wood's light, positive KOH)
  • Chemical leukoderma (history of exposure to certain phenolic germicides, confetti macules)
  • Post-inflammatory hypomelanosis (off-white macules, history of psoriasis or eczema in the same area)

Diagnosis can usually be established on clinical grounds alone. In certain difficult cases, a skin biopsy may be required to exclude some of the above. A defining feature is that pigment cells in the skin are absent in vitiligo. Vitiligo is sometimes associated with general diseases.

Vitiligo may be associated with thyroid disease (up to 30%, especially women), diabetes mellitus (probably less than 5%), pernicious anemia (increased risk), Addison's Disease (increased risk), and multiple endocrinopathy syndrome. Associated cutaneous conditions include white hair and prematurely grey hair, alopecia areata, and halo nevi. There is no increased risk for malignancy. Skin cancers (all types) appear to be unusual.

Ophthalmologic (eye) examination may reveal evidence of healed chorioretinitis or iritis (probably less than 10%). Vision is unaffected. There are no important hearing changes. Laboratory studies for detection of general diseases associated with vitiligo include:

  • Thyroid profile: especially TSH (radioimmunoassay)
  • Fasting blood sugar (to rule out diabetes)
  • Complete blood count with indices (to rule out pernicious anemia

Why Does Vitiligo Develop?

Vitiligo results from a number of factors, Autoimmune, 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

How Much Vitiligo Will You Develop?

Vitiligo is a chronic disease process. Its course is highly variable and unpredictable, but rapid onset followed by a period of stability or low progression is most characteristic. Up to 30% of vitiligo patients report some spontaneous repigmentation, particularly in sun-exposed areas, but this is almost never enough to be satisfactory to the patient
Treatment of vitiligo-associated disease (for example, thyroid disease) does not produce a return of pigment in areas discolored by vitiligo.

Information obtained from:

Thomas B. Fitzpatrick, M.D. , David B. Mosher, M.D. , Madhu Pathak, Ph. D

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Medical Screening

Proper diagnosis is needed to distinguish whether or not you have vitiligo. See your doctor if areas of your skin, hair or eyes lose coloring. Although there's no cure for vitiligo, treatments exist that may help to stop or slow the process of depigmentation and attempt to return some color to your skin.

If your doctor suspects you have vitiligo, he or she will ask about your medical history. Important factors in your medical history include:

  • A family history of vitiligo
  • A rash, sunburn or other skin trauma at the site of vitiligo within two to three months of the start of depigmentation
  • Premature graying of the hair (before age 35)
  • Stress or physical illness

In addition, your doctor will need to know whether you or anyone in your family has had an autoimmune disease. He or she will ask if your skin is sensitive to the sun. Your doctor will examine you to rule out other medical problems or skin conditions, such as dermatitis or psoriasis. Your doctor may take a small sample (biopsy) of your affected skin. He or she may take a blood sample to check your blood cell count and thyroid function. In some cases, your doctor may recommend an eye examination to check for inflammation in your eye (uveitis). A blood test to look for the presence of antinuclear antibodies (a type of autoantibody) also may be done to determine if you have an autoimmune disease.

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Cause of Vitiligo

Your skin is composed of three layers - the epidermis, the dermis and the subcutaneous tissue. The outermost layer of your skin is the epidermis. Melanin, the pigment that determines the color of your skin, hair and eyes, is produced in the epidermis. Melanin provides the coloring of your skin and helps protect it from damage from ultraviolet light.

People of all races are born with approximately the same number of pigment cells (melanocytes). The rate at which melanin granules are formed in these cells and their concentration in the epidermis are inherited characteristics and major factors in skin color differences. When no melanin is produced, the involved patch of skin becomes white. When a white patch grows or spreads, the cause may be vitiligo.

The exact cause of vitiligo isn't known. Doctors and scientists have theories about what causes the disorder. It may be due to an immune system disorder. Heredity may be a factor because there's an increased incidence of vitiligo in some families. Some people have reported a single event, such as sunburn or emotional distress, to trigger the condition. However, none of these theories has been proved to be a definite cause of vitiligo.

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Vitiligo Signs & Symptoms

The main sign of vitiligo is pigment loss that produces milky-white patches (depigmentation) on your skin. Other less common signs may include:

  • Premature whitening or graying of the hair on your scalp, eyelashes, eyebrows or beard
  • Loss of color in the tissues that line the inside of your mouth (mucous membranes)
  • Loss or change in color of the inner layer of your eye (retina)

Although any part of your body may be affected by vitiligo, depigmentation usually first develops on sun-exposed areas of your skin, such as your hands, feet, arms, face and lips. Vitiligo generally appears in one of three patterns:

  • Focal. Depigmentation is limited to one or a few areas of your body.
  • Segmental. Loss of skin color occurs on only one side of your body.
  • Generalized. Pigment loss is widespread across many parts your body.

Although it can start at any age, vitiligo often first appears between the ages of 20 and 30. The white patches may begin on your face above your eyes or on your neck, armpits, elbows, genitalia, hands or knees. They're often symmetrical and can spread over your entire body. The disorder affects both sexes and all races equally.

Most people with vitiligo are otherwise healthy and have normal skin texture and sensation. However, the condition may be more common in people with certain autoimmune diseases - diseases in which your immune system reacts against your body's own organs or tissues - such as Addison's disease, vitamin B-12 deficiency anemia (pernicious anemia), or thyroid disorders, including hyperthyroidism and hypothyroidism.

The natural course of vitiligo is difficult to predict. Sometimes the patches stop forming without treatment. In other cases, pigment loss can involve most of the surface of your skin.

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Vitiligo Facts

Vitiligo is a condition in which your skin loses melanin, the pigment that determines the color of your skin, hair and eyes. If the cells that produce melanin die or no longer form melanin, slowly growing white patches of irregular shapes appear on your skin.

Vitiligo usually starts as small areas of pigment loss that spread and become larger with time. These changes in your skin can result in stress and worries about your appearance.

There is no cure for vitiligo. The goal of treatment is to stop or slow the progression of depigmentation and, if you desire, attempt to return some color to your skin.

Vitiligo: (vit·i·li·go) Vitiligo is a skin condition of white patches resulting from loss of pigment. Any part of the body may be affected. Melanin, the pigment that determines color of skin, hair, and eyes, is produced in cells called melanocytes. If these cells die or cannot form melanin, the skin becomes lighter or completely white. Affected skin is particularly sensitive to sunlight.