What is vitiligo?
Vitiligo (pronounced vit-ill-EYE-go) is an unpredictable, generally progressive skin disease, which results in a loss of inherited skin color over the lifetime of the person. Vitiligo is a non-lethal, non-contagious disease and it does not cause any organic harm, but it has a devastating effect on social life of the affected person and their family. Over 100 million people have vitiligo worldwide, and a great majority of us affected suffer severely as a result of the social stigma and severe psychological burden that result.
HOW MANY PEOPLE ARE AFFECTED BY VITILIGO?
The prevalence of vitiligo is believed to be between 0.5% to 2% of the world population on the average, but local numbers may vary greatly, with spikes up to 4% and even higher in some regions (see World Vitiligo Map). The total number of people suffering from vitiligo is estimated at around 65-95 million people worldwide. However, the actual number may be much higher because vitiligo is a very underreported disease. Why?
- No reporting requirement. Since vitiligo is not considered an infectious disease governments do not require medical care practitioners to report the number of patients diagnosed with vitiligo.
- No effective treatment. Drugs currently prescribed for vitiligo have a limited ability to slow or reverse the progress of the disease. Temporary repigmentation can be achieved in 2/3 of patients but it requires a combination therapy, which is not available in some places, at a considerable time and cost expense.
- Reluctance to diagnose. Since there are no effective treatments, dermatologists are reluctant to diagnose vitiligo, especially in countries with underdeveloped national healthcare system.
- Demorgaphics. The disease affects all races, men and women, and all age groups. It is most common in regions closest to equator, where there is a tendency for patients having limited access to qualified dermatologists.
WHAT IS CURRENT STATE OF VITILIGO AFFAIRS?
Two thousand years ago, the only positive thing people could say about vitiligo was this: it does not kill it’s victim. Things have not changed much since then. The history of vitiligo can be traced to as early as Rig Veda, an ancient Indian sacred collection of Vedic Sanskrit hymns.
The systemic research into causes and treatment of this disfiguring disease is surprisingly limited. Lack of effective therapies is directly linked to insufficient funding from either the public or the private sector.
At the current rate of research funding, leading experts estimate finding a cure will take another 25-30 years and cost over $2 billion. Although vitiligo affects dozens of million of people, it has been a low priority for government research funding.
WHAT IS KNOWN ABOUT VITILIGO?
Vitiligo is a very complex skin disease. It is characterized by a sudden loss of melanin in the skin, which turns it milky white in irregular patches. Complete knowledge of its etiology has been elusive for decades of intense research. Vitiligo is a chronic, persistent and often progressive disorder; spontaneous repigmentation is uncommon.
The current thought is that vitiligo represents a group of different disorders with a similar outcome: the appearance of white patches on the skin. The convergence theory states that stress, accumulation of toxic compounds, infections, autoimmunity, genetic predisposition, altered cellular environment, and impaired melanocyte migration can all contribute to the initiation process of vitiligo. Autoimmune mechanisms likely underlie generalized vitiligo, while a more localized phenomenon (i.e. the altered activities of sensitive nerves in the skin) may be responsible for segmental or focal vitiligo. Vitiligo may develop at the site of physical skin trauma; this is known as the “Koebner phenomenon.”
Not all white patches on skin are vitiligo, but white patches resembling vitiligo are not unusual in the skin. They are named leukodermas. As a matter of fact, vitiligo is a specific form of leukoderma with distinct features that separate it from other leukodermas.
Chemical leukoderma can be induced by dyes, perfume, detergents, cleansers, insecticides, rubber condoms, rubber slippers, black socks and shoes, eyeliner, lip liner, lipstick, toothpaste, antiseptics with phenolic-derivatives, and mercuric iodide-containing ‘‘germicidal’’ soap. Chemical leukoderma may trigger "occupational vitiligo" or generalized vitiligo.
Occupational vitiligo may occur in those who work with depigmenting substances like hydroquinone, paratertiary butyl catechol, paratertiary butyl phenol, paratertiary amyl phenol, and hydroquinone monomethyl ether. The only way to know if a depigmented patch on the skin is vitiligo or not is to consult a dermatologist with special interest in Pigmentary Disorders of the skin.
Vitiligo is significantly more prevalent in young women (≤ 30 years of age) than young men. The peak in females occurs in the first decade of life. Male peak prevalence is in the fifth decade of life.
HOW CAN I TREAT VITILIGO?
Vitiligo is a disease that presently cannot be cured, but successfully managed with many different approaches. Treatment for vitiligo is difficult and prolonged. It is typically a combination of the UV light and topical drugs. Although there is no therapeutic full solution yet, high repigmentation percentages, mostly on facial and neck, can be achieved. Existing therapies are less effective on trunk and limbs, and poor on the acral parts of the extremities.
Choosing a treatment for vitiligo can sometimes be overwhelming. In general, first-line therapy should be safe, effective, minimally invasive, and cost efficient. More complex, invasive, and time-consuming options should be reserved for subjects with stable vitiligo. Each therapeutic option should be tried for a sufficient period of time, which may last for 6-9 months, because the initiation of pigmentation varies and is in general rather slow.
When administered in patients with active disease, a short course of oral or intravenous steroids can arrest the vitiligo progression and induce repigmentation in many patients. However, the optimal dose to maximize benefits and reduce the incidence of side effects has yet to be determined.
QUESTIONS AND ANSWERS
The most common questions about vitiligo are answered by the Vitiligo Research Foundation in a 30-page brochure Vitiligo Q&A that is available in 6 languages.
For more specific information check out the dedicated supplement to Dermatology Therapy Journal "Vitiligo: State of The Art."
Why Is It Important
There are a lot of people who don't want you to stand up for your rights and demand a cure. They say vitiligo is not life threatening and not contagious, and you must embrace a life of a pariah, hiding yourself from sunlight and from the society.
Vitiligo is an under-researched disease resulting in milky white skin patches on the skin. The breadth and complexity of the disease require international collaboration in therapy development. The severity of the disease calls for national healthcare support.
So, speak up for your condition and your rights. Sign the letter to tell the UN Secretary-General that you want recognition and support. It would be appreciated if you could give every member of your family or group an opportunity for signing.
We have collected 502173 signatures of the target 500000 (100.43%). Now let’s get 1 million signatures!