2018

What is vitiligo?

Vitiligo (pronounced vit-ill-EYE-go) is an unpredictable, generally progressive skin disease, which results in a spontaneous loss of 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. A specific type of leukoderma, vitiligo is the most common form of pigmentary disorders, equally affecting all races, age groups and social strata.

 

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 from 0.004% to 9.98%, depending on the region and age group.  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?

The history of vitiligo can be traced to as early as Rig Veda, an ancient Indian sacred collection of Vedic Sanskrit hymns. 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.

At the current rate of research funding, leading experts estimate finding an effective treatment will take another 10-15 years and cost over $2 billion. At least thirteen pharmaceutical companies are either funding their own vitiligo research programs, or supporting programs at academic labs. You can find a study to participate in through ClinicalTrials.gov – the largest database of privately and publicly funded clinical studies from around the world.

WHAT IS KNOWN ABOUT VITILIGO?

Vitiligo is a life-long condition and it’s unlikely that one will ever be completely free of it. The ethiopathogenesis is complex and involves the interplay of multiple factors; however, the exact pathogenesis is not well known. Other than the appearance of the spots and occasional itchiness, vitiligo does not cause any discomfort, irritation, soreness, or dryness of the skin. Vitiligo signs vary considerably from person to person. It is more pronounced in people with dark or tanned skin. Some may only acquire a handful of white spots that develop no further. Others develop larger lesions that join together and cover significant areas of the skin.
 
Surprisingly, the causes of vitiligo are yet to be precisely established. Complete knowledge of its etiology has proved elusive, despite decades of intense research. A complex and poorly understood chain of reactions is controlled by many genes involved in the immune system response and melanogenesis. It is beyond our current ability to understand how combinations of seemingly hundreds of genes result in a vitiligo patch.
 
We do know that an obscure triggering event creates stress in the pigment-producing cells of the skin. An over-reactive immune system mistakenly identifies these stressed-out cells as intruders. Specialize cells called T-cells neutralize these ‘enemies,’ driving progressive skin depigmentation. This can happen to anyone, at any age, in any social group.
 
The current thinking is that vitiligo represents a group of immune-mediated disorders with a similar outcome – the appearance of white patches on the skin. The convergence theory states that intense psychological stress, genetic predisposition, altered cellular environment, toxins exposure and impaired digestion can all contribute to the initiation process of vitiligo.
 
Autoimmune mechanisms likely underlie generalized vitiligo, while a more localized phenomenon may be responsible for segmental or focal type. Vitiligo may also develop at the site of physical skin trauma – this is known as the 'Koebner phenomenon.'
 
Nearly half of vitiligo patients say the disease appeared as a tiny blotch and later spread to a wide pattern after severe physical or mental stress. These are called precipitating factors, because they are not the cause of the disease, but induce its appearance. For instance, liver and thyroid diseases could be precipitating factors for vitiligo.
 
About half of vitiligo cases begin in childhood, often popping up in springtime without warning. Children with vitiligo may have a higher chance of developing other autoimmune diseases, such as alopecia areata, diabetes mellitus, pernicious anemia, Addison's disease and thyroid disorder. Although rare, hypothyroidism is particularly worrisome in this age group because of its potential impact on growth and health status.
 
Children born to parents who both have the disorder are more likely to develop vitiligo. However, most children will not get vitiligo even if one parent has it. In children with focal and segmental vitiligo, there is often no family history of vitiligo or other autoimmune disorders.
 
Generalized vitiligo is associated with a tendency to autoimmune illnesses, the most common being thyroid disease. Weak correlations between vitiligo and endocrinopathies, type 1 diabetes, Addison’s disease, lupus, rheumatoid arthritis, and alopecia areata are also observed. In small studies it was found that vitiligo might negatively affect hearing and eyesight.
 
On the positive side, vitiligo has a protective benefit against melanoma and other deadly skin cancers. And because of the hyper-active immune system, those with vitiligo often say they are less affected by common colds.
 
The course of vitiligo is usually progressive, with phases of long-term stability or even spontaneous reversal. The average remission period after successful treatment of active vitiligo is four years.
 

HOW CAN I TREAT VITILIGO?

Vitiligo is incurable but manageable disease. Treatment options currently available include medication, light therapy, microsurgery and adjunctive therapies. Efficiency of various therapeutic modalities depends on the age of patient and time since disease onset, skin photo type, genetic background and a number of yet unknown factors. 
 
The problem is that there’s currently neither a cure for vitiligo, nor a universally accepted method for limiting the spread of the disease. Although many treatments are being used for its management, none is licensed specifically for vitiligo, in the EU or the US, and it is not possible to predict what will work best for which patients.
 
Symptoms are temporarily reversible with a range of treatments, and their combination works far better than a monotherapy. Simply put, patients can do one of three things with vitiligo: try to restore pigmentation, camouflage the white patches, or destroy the remaining color to have all-white skin. Light therapy remains a gold standard but it may take one or two years to restore natural skin color. Dietary supplements or vitamins can only mildly enhance phototherapy effectiveness and are incapable of creating a lasting effect on their own. Experimental treatments for vitiligo like afamelanotide, HSP70i, JAK inhibitor, prostaglandin, or simvastatin might work for some people, but researchers just haven’t figured out exactly who that is yet.
 
White lesions frequently reappear when treatment is discontinued, with relapse occurring in nearly half of all patients within four years of stopping treatment. This relapse can be significantly decreased using periodic treatment with supportive procedures.
 

QUESTIONS AND ANSWERS

To learn more about vitiligo treatments visit Vitiligo Research Foundation website. 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 six languages.

 

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.

Signatures count

We have collected 502815 signatures of the target 500000 (100.56%). Now let’s get 1 million signatures!

VR FOUNDATION

Firmly committed to curing Vitiligo, the VR Foundation is a non-profit organization funding and fast-tracking medical research globally. We challenge the disease of vitiligo with educational and medicinal enlightenment. We care; we educate; we advance knowledge. We are the VR Foundation.

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