Vitiligo Support and Awareness Foundation (VITSAF), is a not-for-profit, patient–driven, patient-advocate organization incorporated in Nigeria and passionately concerned about the Rights and Well-being of individuals living with Vitiligo primarily in Nigeria and Sub-Saharan Africa, helping ameliorate the agony people suffer as a result of turning from black to white.
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Why and for what?
VITSAF support groups
VITSAF Vitiligo Support Groups (VVSG) are made up of local Vitiligo Patients, concerned and interested Dermatologists, other Professionals such as eg Psychologists, Corrective make-up artist, Image Consultants dedicated towards improving the Quality of Life of Vitiligo Patients.
Guidelines for the Treatment of Patients with Vitiligo University of Cincinnati, Department of Dermatology, James J. Nordlund, M.D., Chairman
Patients with Vitiligo almost uniformly complain about lack of knowledge of dermatologists about the treatment of Vitiligo, their disparaging remarks and lack of interest. We as specialists must do better to assist our patients. Although therapies are less than optimal, they work for many patients and they are worth the effort. The following are helpful hints to assist you with your patients.
ADULTS AND YOUNG PEOPLE; AGES 12 YEARS OR OLDER
Topical steroids such as tramcinolone acetonide 0.1% cream applied once daily.
Useful for smaller areas.
Easy, quick, cheap; avoids tanning contrasts.
About 50% response - partial or total if continued for 4 months to 6 months longer.
Oral steroids are contraindicated because of the long duration of treatment needed and the high toxicity.
See patient at reasonable intervals to avoid steroid-induced atrophy.
PUVA
Oxsoralen-ultra, 10-20 mg. 1.5 hours before UVA is the best medication.
Trisolaren is poorly absorbed from the intestine.
Must use UVA (not UVB).
Sunlight - treat all exposed skin with UVB sunscreen, SPF 8-10.
Medical UVA box.
Light exposure and dose of psoralens should produce mild erythema. This is the optimal dose. It can vary from 10 mg Oxsoralen 5 joules UVA to 30 mg + 10 joules. Each patient must be carefully titrated and individualized. Excessive erythema is harmful to melanocytes in the epidermis.
Start with 10 mg Oxsoralen and 3 joules. Increase the UVA 2 joules per treatment until erythema is reached or 15 joules (an arbitrary endpoint because of time constraints). Then give the patient 20 mg Oxsoralen and 2 joules UVA. Increase 1 joule per treatment until a pinkness is noted in the white skin.
Treatments should be given 2-3 times per week, never on consecutive days.
Patient wears Noir glasses on day of treatment until the next day.
Sunlight begin at 10 minutes front and back. Increase 5-10 minutes per treatment until pink. h. Always use SPF 8-10 sunscreen.
Treatment requires 6-18 months.
Success rates approximately 60-70% if done properly.
Topical psoralen is EXTREMELY photosensitizing. Follow directions in the PDR with ABSOLUTE and TOTAL care. Expect all patients to blister occasionally and forewarn them.
CHILDREN - LESS THAN 12 YEARS
Can use mild steroids topically once daily. Follow with Woods Lamp for repigmentation.
Continue for four months and watch for steroid atrophy. If repigmentation occurs, continue treatment until complete or no further response is noted.
Success rate about 50%.
COSMETIC/SUPPORTIVE CARE
Supportive care is very important because all patients are very upset
Acne, psoriasis or alopecia do not kill; nor does Vitiligo. Patients are equally distressed at having Vitiligo as any other cutaneous disease.
Be empathetic. The patient needs your help. They are delighted they do not have cancer, but they are extremely upset about having Vitiligo.
Cosmetics work for women. Children and males will not use them because of the social problems.
Tattooing of lips and certain areas can be helpful for properly selected patients.
DEPIGMENTATION
Patients with very extensive Vitiligo may be treated with depigmentation.
The patient needs time to consider this type of therapy. Always involve a spouse or the most important people in the patient’s life.
Benoquin is the only treatment.
NEVER use Benoquin for any disease except patients with extensive Vitiligo. Apply twice daily. Occasionally Benoquin produces irritation.
Depigmentation takes time - 6-12 months.
Often it is best to do the face, neck, arms, hands and lower parts of the legs.
Success rate - 75%.
Join VITSAF
There are lots of ways to get involved with VITSAF and our work. If you or a loved one is living with vitiligo or a disfigurement or would like to know and understand more about about community.