Absolute support, extensive awareness, enlightenment and advocate for those living with Vitiligo, for their Rights and well-being
Active Vitiligo Support in Africa

A Handbook for Physicians

Adapted from original text by Judith Porter, Ph.D., Bryn Mawr College and Ann Beuf, Ph.D., Cedar Crest College

Republished on www.vitsaf.org

If disorders were ranked according to the discrepancy between concern of the patient and concern of the physician, vitiligo would probably head the list. You, as the physician, may think “it is not painful, contagious, or fatal. While the death of pigment cells may leave a person with a stigmatized appearance it is, after all, only a cosmetic disorder”. The patient, on the other hand, may feel depressed by cosmetic disfigurement, anxious about spread, and think “The doctor doesn’t really care how I feel”.

Physicians may be unaware that a disease like vitiligo which is not “serious” by medical standards can have serious psychic consequences. Although vitiligo is not painful or life-threatening, it may negatively affect the patient’s quality of life by occasioning a great deal of emotional pain. Familiarity with vitiligo and its psychosocial consequences can help you treat your patients more effectively.

WHAT IS VITILIGO?

Vitiligo is a patterned loss of melanin pigment resulting from the destruction of melanocytes. Hypopigmented areas appear on the skin of a subject with normal pigmentation. Part or all of a body surface may be involved, but the most common sites of pigment loss are exposed regions (face, backs of hands); body folds (axillas and groin); around the orifices (eyes, nostrils, mouth, umbilicus, genitalia); and sites of trauma and recent injury. Vitiligo is usually bilateral and symmetrical, although vitiligo may also be segmental, involving pigment loss in cutaneous segments supplied by a nerve.

Vitiligo can begin at any age, but in half of all affected patients, its onset is noted before the age of twenty. In more than half, there is a family history of vitiligo or early greying of hair. In most cases, periods of rapidly extending hypo-pigmentation occur. After several months, the number and size of the light areas become stable and may remain so for several years; other episodes of pigment loss may occur later on, however often following stress or trauma, and the hypopigmentation may spread.

Most patients with vitiligo are in good general health. Although 1 – 2% of the general population has vitiligo, the incidence is 8 – 20% in people with adrenocortical insufficiency, hyperthyroidism, alopecia areata, pernicious anemia, melanoma, scleroderma, morphea, and certain types of uveitis. Three different hypotheses have been advanced to explain the cause of vitiligo: autoimmunity, neurochemical factors, and self-destruction of melanocytes. Research on the cause is continuing.

DIAGNOSIS, REFERRAL, AND TREATMENT

A sizeable portion of vitiligo patients seek help from non-dermatologists at the onset of this disorder. Many of these patients are either misdiagnosed or have been told that there is nothing that can be done for the disease. A number of patients who find their way to major vitiligo treatment centers learn of these centers from the mass media rather than their physician. It is thus important for family physicians to inform themselves of the symptoms of vitiligo, and to refer patients for treatment to either a dermatologist or to one of the major medical centers specializing in the care of vitiligo patients.

There are several modes of treatment in use today. The most common [l1] is a combination of psoralens (applied to the skin or taken orally) and sunlight. Some clinics are using P.U.V.A. boxes which provide even exposure of ultraviolet to the body. While the psoralen treatment is not consistently successful, patients benefit psychologically from knowing that they can take action to improve their vitiligo to at least some extent. Discuss these options with your patients, and if you are not a dermatologist, refer them to a dermatologist or vitiligo clinic where they can go for specific care.

Cosmetics are useful to many patients as a concealment strategy. Some individuals find special dermatological cosmetics effective; others are satisfied with a mixture of over-the-counter brands. If patients are concerned about their appearance, they should be encouraged to experiment with a wide range of cosmetics.

Another treatment strategy is total depigmentation to ensure even color, although this strategy is tried only for patients who have very severe cases of the disorder. It is used only with extreme caution on black patients, because of the threat to racial identity entailed by depigmentation.

AVAILABILITY OF THE PHYSICIAN

Vitiligo patients worry about the social impact of their disorder, about the spread of vitiligo, about whether they have skin cancer. They are concerned about the unknown side effects of treatment. They worry about the genetic aspect of the disease; will they pass it on to children and grandchildren? These worries tend to build and intensify it they are repressed. In a recent study, it was found that although the majority of the vitiligo patients surveyed had questions and anxieties about their condition, only a minority had voiced these concerns to their doctors. People said that their doctors were always in a hurry, abrupt, or that they seem uninterested in the patient.

Encourage your patients to ask you questions and to discuss their concerns with you. There are very few patients who do not have worries about vitiligo.

Sometimes patients forget to ask you questions during a visit or the questions may not occur to them until they have left the office. They are reluctant to telephone you; and they keep their questions for the next visit, exacerbating the worry. It is helpful to assure the patient at the end of a visit that he or she should feel free to call you between appointments to ask questions. It is important for the patient to know that the disorder is common, and it is often helpful to the patient to meet or speak with others similarly afflicted, either individually or in informal group sessions. You may also suggest that the patient contact VITSAF to discuss their condition.

TAKE THE PATIENT SERIOUSLY

A number of vitiligo patients feel that their situation has been trivialized by physicians. When they have voiced concerns to their doctors, they have often been told that they should “stop feeling sorry for themselves”. Some doctors, in an effort to make the patients feel better, have compared vitiligo to more life-threatening disorders. “You’re lucky you don’t have cancer” is a response many vitiligo patients have received.

It is important for the physician to realize that vitiligo has a major impact upon quality of life: patients may suffer from embarrassment, shame, and depression as a result of their appearance. A recent study of a large sample of vitiligo patients shows that the majority feel stigmatized, ill at ease socially, and discriminated against by others due to their condition. Although approximately one-third of patients do not appear to suffer negative psychological effects from vitiligo and appear to adjust well to the disorder, two-thirds manifest some degree of shame or other negative psychological effect. Some patients respond by depression (“I feel like a freak; like someone repulsive”). Others are acutely embarrassed, avoiding social situations where their vitiligo will be noticed. Lowered self-esteem is a frequent result of vitiligo. The disease creates a great need in many of its victims for reassurance and support from the physician. Simply answering a patient’s questions does not ensure that these needs will be met.

An understanding physician can deal with milder psychological reactions by being a good listener and giving some advice on treatment and the use of cosmetics to camouflage the disorder. Patients with more profound reactions should be referred to counseling.

Research reveals that we can predict which patients are particularly in need of emotional support or psychiatric referral. The patients most at risk of suffering adverse psychological effects are those with underlying low self-esteem or depression, conditions that are often present prior to the onset of vitiligo. For such people, vitiligo is often “the straw that breaks the camel’s back”. Individuals with feelings of personal inadequacy cope poorly with vitiligo, feel that the prognosis is hopeless, and think that neither family nor physician cares about them. They are also less likely to trust the judgment of their doctor. These perceptions create a vicious cycle, driving the patient deeper into depression. Patients who have poor self-esteem or underlying feelings of worthlessness should be referred for psychiatric help. The underlying depression must be treated if the patient is to cope adequately with the disease or even to continue in dermatological treatment for vitiligo.

Young adults, those with severe vitiligo, and those for whom appearance is very important are also high risk categories. You should not assume, however, that severity is the most important factor predicting poor adjustment. A young adult with low self-esteem may react with depression to a very mild case; an older person with good self-esteem may be relatively unperturbed by a moderate or even by a severe case. Those with darker skin[l2] are under particular emotional stress from vitiligo, due to both enhanced visibility of vitiligo on dark skin and the racial implications of the disorder.

You should carefully evaluate the emotional reaction to vitiligo of individuals in these categories, giving them additional support or reassurance. For more severe emotional reactions, referral to psychiatric personnel for individual or group therapy is helpful. Many black patients find it easier to speak with a black psychiatrist or social worker about the disturbing racial implications of the disease.

There is a notion that, as the society places special emphasis on female appearance, males will be less concerned about impaired appearance than will females. Research with vitiligo patients indicates this is a myth. Men are every bit as concerned about their appearance as women; they are simply less likely to tell their physicians about it or to express the emotions surrounding physical stigma. You should take the initiative with male patients. Ask them about their feelings and advise them on the use of concealment strategies. The use of cosmetics is helpful to patients, but may be avoided by men because of our society’s sex-role stereotypes. A physician’s advice in this matter can help the patient take positive action which helps minimize social embarrassment.

The young patient with vitiligo may need special attention, especially the junior high-school age child. During the pre-teen and early teen years, appearance assumes renewed importance. Children of this age often are required to shower with others after gym, exposing vitiligo on normally hidden body parts for the first time. Young children may be protected from some of the negative psychological consequences of vitiligo by supportive parents and by developing competencies in other areas, but even for the elementary-school child, periods of transition (moving, going to a new school) may be particularly stressful. Young patients should thus also be evaluated for stress.

Reassurance or encouragement to develop competency in other areas is helpful to many children. Children who seem disturbed by the disorder may need individual or group psychiatric therapy. Many parents resist use of cosmetics by a child, but cosmetology may improve self-esteem. It is important to evaluate the child’s reaction to vitiligo without the presence of the parent. Parents may sometimes try to protect the child by denying the child’s psychic distress, or in some cases, children may avoid describing their true feelings to protect the parent.

American society places a high value on appearance. Numerous studies have documented the preference for attractive people in job acquisition, school grading, friend selection, help in emergency situations, and the extension of credit. The patient who fears the social consequences of vitiligo is not paranoid, but responding to a very real situation in our society. This fact should underlie your dealings with patients whose appearance has been impaired.

RESOURCES

Further information about vitiligo may be obtained from the Vitiligo Treatment Centers at either Howard University Hospital, Department of Dermatology, Washington, D.C. 20060; Yale University School of Medicine, Department of Dermatology, New Haven, Connecticut, 06510; . or the University of Cincinnati School of Medicine, Department of Dermatology, Cincinnati, Ohio, 45267-0592 and the National Vitiligo Foundation, Inc., P. 0. Box 6337, Tyler, Texas 75711.

BIBLIOGRAPHY

The following is a partial bibliography:

  • Lerner, Aaron – “On the Etiology of Vitiligo Gray Hair,” American Journal of Medicine 51:141-148, 1971.
  • Lerner, Aaron – “Vitiligo” Journal of Investigative Dermatology 32, 285-310, 1959.
  • Lerner, Aaron – “Vitiligo,” in Clinical Dermatology, Demis, Crounse, Dobson and McGuire (Eds.), Maryland: Harper and Row, 1972.
  • Lerner, Aaron; Nordlund J., Albert, D., “Pigment Cells of the Eye in People with Vitiligo,” New England Journal of Medicine 296:232- 1977.
  • Lerner, A.; Nordlund J., “Vitiligo: What Is It? Is It Important?” JAMA 239:1183-1186, 1978.
  • Porter, J.; Beuf, A., Nordlund, J. ; Lerner, A., “Personal Responses of Patients to Vitiligo; The Importancet of Physician-Patient Interaction.” Archives of Dermatology 1 14, 1384-5, 1978.
  • Porter, J.; Beuf, A.; Nordlund, J.; Lerner, A., “Psychological Reaction to Chronic Skin Disorders,” General Hospital Psychiatry 1:73-77, 1979