By Nada M. Elbuluk, MD, as communicated to Susan Bernstein
One of the most challenging aspects of generalized vitiligo is how far it will progress. It’s different for every person. People who are newly diagnosed often ask, “How much will it spread or how stable will it be?” Some people can have a stable disease for years. But others can have vitiligo, which spreads at any point in their lives. If you are receiving treatment, this can help keep your condition stable. If not, you can develop new patches.
[Choosing to camouflage vitiligo] is a very personal decision. Each person with vitiligo deals with it differently. Some people want to hide it. Other people are more comfortable with the way their skin looks and don’t want to wear makeup. First, we’re going to have a conversation about camouflage. I want to know how you feel emotionally about the appearance of your skin. I can also ask, “Would you like to start treatment or have your treatments not responded?” There are makeup products for vitiligo that you can purchase over the counter. Some people also use self-tanners to help camouflage the areas of their skin.
I also direct people to various available support resources such as B. the Global Vitiligo Foundation. They have a section on their website for support resources for patients with vitiligo, as well as support groups across the country. Meeting other people who also have vitiligo can help you control your emotions. Talking to others in a support group can be a very supportive, positive experience. There are also online support groups for Vitiligo. I try to suggest credible sources of information online.
Research has clearly shown that vitiligo can have a profound psychosocial and emotional impact. For one, you no longer feel like you have control over how you look — how your skin looks. Vitiligo changes the color of your skin and you can develop white patches anywhere on your body, including your face. There is also a lot of variability in vitiligo and how extensive it is on your body. People also feel insecure about the progress of their vitiligo: will I get a flare-up? Are these patches getting bigger?
Vitiligo can affect people of all skin colors. I have patients of all colors. We see it in both
adults and children. It can appear earlier in life, but it can develop as you grow up. It can be difficult for children to understand what is happening to them, and it can also be difficult for other children around them to understand.
Therapy and support groups for people with vitiligo can be very helpful. It depends on how badly affected you are, but seeing a psychologist or psychiatrist can also help. We encourage any person experiencing negative emotions to seek medical attention.
Winnie Harlow was one of the first people with Vitiligo to proudly report it publicly. Beautiful and a successful model, she often models without using makeup to cover up her vitiligo. This has helped reduce the stigma surrounding vitiligo. In recent years there has been a positive wave regarding self-acceptance in general. People are starting to accept beauty in all forms, which is so important. CoverGirl also recently picked their first spoke model with Vitiligo. Mattel released a Barbie doll with Vitiligo. You see retail stores and marketing campaigns using models with Vitiligo.
Self-accepting your vitiligo doesn’t eliminate the need to have treatment options for those who want them. But everyone should know that they are beautiful and have self-worth. It is important to educate our society about Vitiligo. People may ask you if it’s contagious – it’s not. My patients also ask if it’s hereditary. Although vitiligo has a genetic and hereditary component, the likelihood of it occurring in the next generation is low. There is less than a 10% chance that you will pass it on to your children.
If you don’t treat it and just choose to live with your vitiligo like this, you may not need to see your dermatologist regularly. Typically, if you’re being treated or have vitiligo that’s spreading quickly, you should see a board-certified dermatologist every few months to monitor your condition and any changes.
My message to anyone who is wondering if they have vitiligo, or have been diagnosed with vitiligo, is to see a board-certified dermatologist, particularly one who specializes in treating vitiligo. Here, too, it is completely up to you whether you want to be treated or not. Your dermatologist can guide you and talk to you about all your options.
If you have vitiligo, you should wear sunscreen with an SPF of 30 or higher, as we would recommend everyone. We used to worry that people with vitiligo had an increased risk of skin cancer. However, with more research, we found that this is not the case and you actually have a lower risk of melanoma. That said, we recommend sunscreen as a general precaution, and if you’re going to be in the sun all day, reapply it every 2 hours.