What You Should Know About Vitiligo

Vitiligo is generally classified as an autoimmune disorder: a disorder in which the body’s immune system attacks its own cells or organs. 

Researchers suspect that, in cases of vitiligo, the immune system is attacking the melanin-producing cells, resulting in a loss of pigmentation.

Vitiligo is a disease that causes skin color loss that appears as white or light-colored patterns or ‘blotches’ on various parts of the body. This happens when melanocytes, which are pigment (or color) producing skin cells, are attacked and die or stop functioning properly. This causes the loss of skin color that can affect any part of the body, including the mouth, scalp, and hair, causing the skin and areas of the hair to turn a milky-white color. 

The most obvious sign or symptom of vitiligo is loss of pigment on the skin, resulting in milky-white, irregularly-shaped patches on the skin. Vitiligo typically occurs first on sun-exposed areas (face, hands, feet, arms, legs) or areas where clothing or shoes consistently rub on the skin.

Less common signs include pigment loss or graying of hair on scalp, eyebrows, eyelashes, or other affected areas. Some may also experience loss of pigment on the tissues that line the inside of the mouth (mucous membranes) and the retina of the eye.

Some of those affected by vitiligo experience intense itching at the site of depigmentation during active stages.

The doctor usually begins by asking the person about his or her medical history. Important factors are a family history of vitiligo or other autoimmune diseases; a rash, sunburn, or other skin trauma at the site of vitiligo 2 to 3 months before depigmentation started; stress or physical illness. 

The doctor may take a small sample (biopsy) of the affected skin, and/or a blood sample to do lab work that checks for thyroid antibodies/disease, vitamin D levels, and other conditions that may affect general health or autoimmune status. 

The doctor may also use a Woods light (specialized black light) to confirm vitiligo, as even when undetectable by the eye alone, the depigmented areas will glow under this light.

What causes the disease is unknown, and currently, there is no cure. It affects men and women equally and currently there are more than 70 million people worldwide affected by this disorder, half of which are children. Many people are born with it or develop the condition in early childhood.

 It is believed that others develop it over their lifetimes due to a multifactorial process involving the interplay of genetic, autoimmune, environmental, and neurogenic factors.

Vitilago is NOT contagious!

Genetics have been determined to play a role in developing vitiligo, due to data that shows an increased prevalence of the condition in family members of those diagnosed with vitiligo. However, the heritability of vitiligo gets complicated due to its involvement of several genes in DNA.  

Each family member inherits different combinations of these genes. 

It is important to note that genetics are not the only factor at play with vitiligo. For example, an identical twin of someone with vitiligo only has a 26% chance of having vitiligo despite the two people having essentially the same DNA. Therefore, other factors are involved. 

Environmental factors have been identified as playing a significant role with evidence pointing to factors such as skin trauma, chemical exposure, sunburn, and stress.

Generalized vitiligo is a progressive disease resulting in somewhat unpredictable cycles of spreading and cycles of stability throughout life.  For some, it begins slowly with only a few areas of the body affected; for others, it begins rapidly, with many areas affected by both large and small patches of pigment loss. 

Many people report going many years without new patches developing, then experience pigment loss years later. Others report spontaneous repigmentation, with no treatment at all.

The spread of vitiligo is ultimately caused by the death of melanocytes, the cells that produce our skin and hair color. This melanocyte destruction is believed to be due to multifactorial causes such as autoimmune factors, genetics, and inciting events such as skin trauma, chemical exposures, etc.

Currently, there is no cure for Vitiligo. While researchers are looking for a cure, treatment cannot currently cure this disease. Doctors can prescribe treatments that might help even out skin tone, and these treatments can help restore lost skin color, but the color (repigmentation) may fade over time. To keep their results, many patients have maintenance treatments.  

There are also a variety of 'natural' tanning products and 'skin makeup' that may provide a more even appearance. Over the summer, I will share more about my personal recommendations in my 'Share Our Truth' blog. 

Vitiligo is a skin condition that results from the intersection of many causative factors including hereditary factors and environmental triggers and trauma. Stress can certainly play a role in the triggering or progression of vitiligo in those that are already predisposed to it. 

For example, when an individual experiences high levels of emotional stress, their melanocytes are more likely to be exposed to harmful chemicals (reactive oxygen species). 

Typically stress alone is likely not enough to cause vitiligo, but it can certainly combine with harmful genes and environmental factors to trigger its development. This said, in my personal experience, stress  has determined is the cause of my Vitilago. 

While some people totally depigment through the natural progression of their vitiligo, others make the choice to depigment. 

It is generally only used in cases of advanced vitiligo, where there is more than 50% loss of pigment, though some physicians may allow its use with a lower percentage when a great deal of the vitiligo is located in the more visible areas.

If a physician determines that a patient is a candidate for this treatment, they begin the relatively simple process by using a topical prescription called monobenzyl ether of hydroquinone (MBEH). 

It is important to understand that this is a systemic treatment, meaning that once the cream is applied to the skin, it will cause depigmentation in remote areas away from the site of application.

The skin of those who have depigmented looks quite normal, just fair. The paleness is not a stark white, as many fear, but rather a slightly pink tone. 

Global studies have consistently reported the negative impact of vitiligo on patients' self-esteem and quality of life. In addition, vitiligo causes isolation, stigmatization, loss of self-esteem, depression, and self-consciousness.

Often it starts with just processing the diagnosis and then allowing yourself to grieve. You are going through a tangible loss, and that is OK.   

The Global Vitiligo Foundation may be a great resource for many people, 

www.globalvitiligofoundation.org.

This organization is often focused on treatment, and with a small success rate, many Vitilagans have shifted to private support groups on social media that don't allow the promotion of any treatments and instead focus on embracing the condition and seeking to honor what Vitiligo is and find the beauty in the vastly differing skin colors and patterns that are prevalent throughout the vitiligo community . 

I have vitiligo, now what?

1. Make a good connection. Find a doctor who knows a lot about the condition and become your own well-being advocate. Ask questions and be bold in your search for answers. The more information you have, the better you can make empowered decisions for yourself. 
2. Learn about your condition. Find out as much as you can about vitiligo and your treatment options so that you can help decide what steps to take.
3. Communicate your feelings with those around you by confiding in  friends and loved ones. They love you and often are your greatest source of strength and support. 
4. Take steps to reduce stress, exercise moderately, and work on a body-positive mindset, find a practice that allows you to quiet your mind, like meditation or yoga.
5. Many patients address the mental health and social impact by seeking counseling and finding in-person and online communities and supportive patient advocacy organizations. It is a severe social stigma for people, especially kids, and often results in a higher-than-average rate of suicide in young people. 
6. Be gentle with yourself. Practice self-love and allow yourself to go through the process of loss and, ultimately, self-discovery. It WILL happen, and you CAN make peace with this condition.  

Vitliago is not the end but an opportunity for new beginnings. So let's connect and share our truth. You are not alone in your journey.

Vitiligo is ‘generally’ separated into two main types – generalized vitiligo and segmental vitiligo with a couple of notable subsets in each. In both types of vitiligo, the cells that create skin pigmentation are destroyed, creating patches of lighter skin. However, generalized and segmental vitiligo present differently on the body.

Generalized Vitiligo

Generalized vitiligo is characterized by symmetrical patches of depigmentation on both sides of the body. Often, generalized vitiligo starts with patches of skin discoloration on the hands, feet, elbows, armpits, or face. Generalized vitiligo can also be referred to as non-segmental vitiligo, bilateral vitiligo, or vitiligo vulgaris as noted in the diagram.

About nine in 10 people with the condition have generalized vitiligo. A person can develop generalized vitiligo at any age, and it frequently progresses throughout life.

Generalized vitiligo may cause non-skin symptoms and is associated with autoimmune and thyroid conditions.4 Learn more about health conditions related to vitiligo.

Generalized vitiligo can be divided into several subtypes:

• Acrofacial vitiligo affects the head and distal extremities such as the fingertips.
• Focal vitiligo involves one patch or a few small, isolated patches of depigmentation in one area that have not spread after two years.
• Universal vitiligo is an uncommon form of vitiligo where 80 percent or more of the skin loses pigment.

Segmental Vitiligo

In contrast to generalized vitiligo, segmental vitiligo usually affects just one side of the body. Segmental vitiligo can also be referred to as unilateral vitiligo.

Segmental vitiligo impacts about one in 10 people with vitiligo and is more prominent in children – three in 10 children with vitiligo have segmental vitiligo. Individuals with segmental vitiligo typically develop the condition as children or young adults. Unlike generalized vitiligo, which can advance throughout a person’s life, segmental vitiligo usually progresses for a year or two and then stays constant.

Segmental vitiligo can manifest in specific patterns that are consistent from person to person. Many people with segmental vitiligo also lose some amount of hair color on the head, eyelashes, or eyebrows.

Segmental vitiligo is less strongly associated with autoimmune conditions.

Vitiligan: A person with Vitilago.

I was in my mid-forties when I first noticed a light spot on my left hand in the summer of 2018. It was a particularly stressful time, and over a period of six months, the spot grew, and other spots emerged on my other hand. Then, unexpectedly, the spots disappeared almost entirely, and I regained my lost pigment. 

This continued off and on until 2020, when the spots reappeared, and then I noticed spots on my feet and then my chest. Only during this what I call 'outbreak' the spots stayed, and the color didn't return. 

 In the spring of 2021, I sought a medical diagnosis and, in the process, discovered that I was among 1% of the 1% of the population with vitiligo that experiences' regimentation' where the melanocytes regenerate and the color returns. Only now, this regimentation has stopped, and the loss of color has turned into what is known as which is 'generalized vitiligo'.

Since vitiligo is an autoimmune disease but often shows up as a 'secondary' condition from a primary disease such as diabetes, anemia, lupus, thyroid, rheumatoid arthritis, Addison's disease, Celiac disease, Crohn disease, ulcerative colitis, and a whole host of various cancers, my doctors tested for everything. The good news was that all my tests for these diseases were negative. The problem then became, because they couldn't identify what was causing the vitiligo, they didn't know how to treat it.

I was prescribed two different kinds of skin creams, a prescription strength vitamin D supplement, steroids, and a cocktail of ultraviolet light therapies. Finally, after countless hours applying stinky creams, gaining 30 lbs taking steroids, and enduring light therapies that caused my skin to feel like I had a permanent low-grade sunburn, I just said ENOUGH. I knew I had to change my mindset. 

I stopped focusing on the need to 'keep my color' and instead on loving the new me and being as healthy as I could. For me, that started with my mind and in my heart. It was time for me to practice radical self-acceptance and begin loving the skin I was in. And that was a new kind of healing for me. 

I have chosen to take of the mask of shame and self loathing. I now view my skin as beautifully unique.  I would rather be healthy and happy in my new normal than obsessively unhappy trying to recolor myself.  

My mission is to empower others to find their voice and share the truth of their personal experiences, the good and the hard. There are no 'bad' experiences. Things happen for us, not to us, and I am grateful for the opportunity to share what has happened for my personal growth and self-love as a bold, beautiful, and proud Vitiligan.