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Active Vitiligo Support in Africa

A Handbook for Parents

Adapted from A Handbook for Patients by Judith Porter, Ph.D. and Ann Beuf, Ph.D.

Republished on www.vitsaf.org

Parents are concerned about their child’s health and happiness. Certainly, learning that your child has vitiligo has raised some questions in your mind. Many of these questions can be answered by your doctor. You should feel free to ask the people who are treating your child any questions about vitiligo. The better informed you are, the better able you will be able to help your child deal with vitiligo. Pretending or hiding your child from the public is not the best way to deal with the situation and may make their vitiligo worse. Here is some general, non-medical information to suggest what you as a parent can do to help your child. It is based on a four-year study of vitiligo patients and their reactions.

The manner in which the child responds to vitiligo depends to some extent on the child’s age. Very little children, under the age of four, seem almost unaware of their vitiligo. An unhappy incident such as name-calling or cruel reference to the disorder can suddenly make them aware of the condition, but most of the time they do not dwell on it. The happiness of little children is primarily rooted in family experience: being loved and well treated by “significant others”. Given a happy and secure family environment, small children with vitiligo do not experience severe psychological reaction to the disease.

For children in the elementary school years (ages 5-10), the focus of life continues to be the family, but the concerns of an expanding social world, like school and relationships with friends, are added to this. The peer group is important, but children of this age often have rather superficial criteria for the acceptance or non-acceptance of a peer. These criteria may include gender, material possessions, where someone lives, manner of dress, and appearance. Vitiligo may thus cause some stress for the elementary school-age child, especially if the child is in a new situation (the first day of school, moving to a new neighborhood). Most children of this age group who have vitiligo experience a lessening of peer rejection over time, especially if they are friendly and fun to be with. After some initial incidents, children with vitiligo are usually accepted and vitiligo becomes “invisible” to friends.

Parents can be of great help. Here are some ways you can help your elementary school-age child:

1) Be aware, ahead of time, that new environments and situations are going to be stressful for your child. Gently prepare your child for some of the experiences he or she may have. For instance, you might say, “Some of the kids in your first grade class may not know much about vitiligo, so they may look at you or ask you questions about it. Here are some of the answers you can give them…” You should also make sure that your child does not anticipate meanness on the part of peers, but rather curiosity. This removes some of the emotionalism from situations which do arise and gives the child a constructive role to play that of an educator of his or her classmates.

2) Be especially attentive to your child and be patient with the child during periods of newness or change. The child may be employing all his or her effort in coping with this new situation; such a child cannot be expected to behave perfectly at home, for he or she may come home emotionally exhausted. Your hug or moment of special time with your child can provide a salve to the petty hurts inflicted by others and helps build a strong sense of self-esteem which will serve him or her well in the future.

3) Solicit the help of other important adults in the child’s life. Discuss vitiligo frankly with your child’s teacher (scoutmaster, coach, etc.), and share your child’s anxieties with them. Make sure these adults are properly informed. For example, teachers should know that vitiligo is not contagious, and they should not harbor superstitious beliefs about its cause. Ask these adults to handle, not to ignore, incidents of teasing or questioning about vitiligo. A child with vitiligo needs the security of knowing that, where he or she is, the adults in authority will not tolerate abuse about vitiligo. Rather than punishing the offending party, the adults in authority must attempt to educate that person about vitiligo and to engender empathy with those who have it.

4) Encourage your child’s enthusiasm for work. Vitiligo can be forgotten in the excitement of reading, painting, or the development of other competencies.

Between the ages of 11 and 13, young people are particularly concerned with their appearance. The physical changes of adolescence coupled with the move from elementary school to junior high can create self-consciousness in any child. Even children without vitiligo complain that they are too fat, their noses are too big, their feet are too small.

Already self-conscious, the junior high school student faces a new physical setting, new teachers, and new classmates. For those with vitiligo, facing new situations is not easy. Support systems are needed: preparation for a new setting, assurance of parental affection, the seeking of support from teachers. At this stage, it is also important to encourage your child’s achievements in other areas. The acquisition of new skills, the sharpening of old ones, and the praise received for accomplishment can make your child proud and self-confident.

The older teenager seems to have an easier time coping than the early adolescent. Young men and women during later adolescence have major life choices to make, such as whether or not to go to college and what occupation they will select. Many are involved in steady relationships with a member of the opposite sex. All of this detracts from a consuming focus on vitiligo. At this age, members of both genders may be aided by their parents’ emphasis on future-oriented matters. Being treated as a responsible adult serves the double function of building self-esteem and minimizing the concern with appearance. The older teenager may still manifest some concern about vitiligo; thus, parental love and support can make a big difference in ability to cope.

In addition to age, the severity of vitiligo also influences a child’s response to the disease.

Vitiligo which is not visible during a normal day’s activity is less upsetting to children than vitligo on the face, legs, arms, or hands. If your child has vitiligo on the stomach and nowhere else, it is best to keep concern about the appearance at a low level, avoid the use of clothing that reveals the vitiligo, and seek treatment for the disease.

Parents should be prepared to take a more active role in preserving the child’s sense of well-being. Parents must stress the fact that their affection is based on inner characteristics rather than on appearance. They should stress the child’s positive attributes such as personality and intelligence. Parents must prevent themselves from becoming over concerned emotionally with the child’s Vitiligo for, if they do, they will transmit a message to the child that vitiligo is both negative and of immense importance.

If, on the other hand, the child has highly visible vitiligo, treatment is helpful, and its effectiveness is linked to a faithful adherence to the routine set out by the physician. Parents must cooperate with the medical staff in making sure that the child observes the treatment rules and is persistent.

For the child who is severely afflicted with vitiligo and is disturbed by his or her appearance, various forms of concealing the condition may be considered. Within reason, clothing can be selected which makes vitiligo less visible. For example, attractive leotards can cover vitiligo on the legs, and vitiligo on the arms can be masked by long sleeves.

Cosmetics are an important resource as well. It is necessary for parents to recognize the helpful effects of cosmetology for children who are bothered by their appearance. A wide array of special cosmetic products exists which can cover vitiligo. There are a variety of shades now available, and many cosmetics are waterproof. Yet some parents will not let children under a certain age wear cosmetics; or won’t let their sons wear cosmetics; or may think that “nice girls” don’t wear make-up. Such beliefs are based on social stereotypes. Remember that cosmetics are not being used to beautify or feminize the child with vitiligo. Rather, the purpose of these cosmetics is to restore the child’s appearance to normal. Remember that appearance is closely linked to self-confidence. If the child is upset by vitiligo and cosmetics can help this situation, by all means, use them.

In some cases, a child may become unhappy, angry, or depressed by vitiligo. If you observe these reactions or any other dramatic changes in your child’s personality or behavior, it is a good idea to seek the help of a professional – a psychiatrist, psychologist or a social worker. These people are trained to help others who are having trouble associated with impaired appearance. Depression in particular is always a serious matter, and you should not hesitate in obtaining help for a depressed child.

Many people believe that only girls or young women are concerned about their looks. Females in our society are certainly evaluated in terms of appearance more than males are; nonetheless, research indicates that males with vitiligo are just as concerned with their appearance as are females. Boys with vitiligo have the same worries and concerns as do girls and need the same kind of help: parental support, encouragement, praise for strong points, cover-up techniques, and the encouragement to develop important life skills.

If you are the parent of a child with vitiligo, you should regard yourself as an important part of the treatment team. Your understanding of the disease and your love and support can help your child cope effectively.