Recently diagnosed with vitiligo? You’re not alone. Although vitiligo is considered a rare disease because it affects only 1% of the world’s population, approximately 78 million people live with it today. In the past few years, vitiligo research and support have surged, creating resources for those living with this autoimmune disease. If you think you have vitiligo but aren’t sure, start by getting an official diagnosis. If you’ve been diagnosed, welcome to this community. Here’s a guide to six options you might consider as you begin to navigate life with vitiligo.
See a vitiligo specialist
If you’re interested in seeking treatment for your vitiligo, there’s good news. Not only are there safe and effective ways to treat vitiligo today, but new options for treatment are currently in clinical trials. That means even better treatments could be on the horizon. Will any dermatologist know the best way to treat your vitiligo? Unfortunately, no. Your best chance for a positive treatment outcome is to find a dermatologist who specializes in treating this complex disease. Dedicated doctors and researchers in the U.S. and abroad are working to better understand vitiligo and develop new approaches to treatment. Though many dermatologists are familiar with vitiligo, a specialist is far more likely to employ the current, most effective treatment protocols. Learn more about the benefits of seeing a specialist and how to find the right dermatologist for you.
Get screened for other autoimmune diseases
Vitiligo is an autoimmune disease that affects the skin. The white patches we see on the outside are a result of what is happening on the inside. If you have vitiligo, your immune system sees your pigment cells as a threat and attacks them. If you have an autoimmune disease like vitiligo you have an increased risk of developing another autoimmune condition. In a recent study, 20% of people diagnosed with vitiligo had more than one autoimmune disease, the most prevalent being Hashimoto’s thyroiditis, or hypothyroidism. Consequently, vitiligo specialists often recommend additional screening to identify other possible autoimmune diseases. Learn more about autoimmunity and screening resources here.
Consult a nutritionist
Can your diet affect your vitiligo? It’s a common question. Scientist have long studied the possible links between autoimmunity and gut health. To date, potential associations are not well understood in the scientific community. Additionally, there have not been any controlled studies on vitiligo that have led to a recommended diet. However, there is anecdotal evidence that good gut health has a positive effect on vitiligo. Studies also show that antioxidants and certain supplements can help stabilize vitiligo and potentially improve repigmentation. Ultimately, there is no downside to better gut health. However, it is important to speak to a doctor or nutritionist before changing your diet or taking supplements. Learn more about research on diets and vitiligo here.
Get a good quality sunscreen
Think all sunscreens are created equal? Think again. Dermatologists recommend a broad-spectrum sunscreen SPF 30 and higher for those with vitiligo. A long-wearing, broad- spectrum sunscreen is important for everyone but particularly crucial for those with vitiligo. While SPF measures effectiveness against UVB rays, both UVA and UVB rays can be harmful to the skin. Broad-spectrum sunscreen will protect against both. Vitiligo spots have no built-in defense against UV rays, so rain or shine, sunscreen is an important part of a daily skin regimen. With so many products to choose from, how do you find the one that is right for you? Find top-rated sunscreens by those with vitiligo here and learn about more ways to keep your skin sun-safe here.
Vitiligo can affect your sense of self and alter everyday life in challenging ways. During this time of emotional and physical change, it is important to make your mental, physical and spiritual health a priority. Don’t be afraid to lean on family and friends who will support you. Think about what you need and let them know how they can help you. Consider connecting with your community of faith and/or talking to a therapist. Having the support of others can help you navigate your ups and downs. If you take steps to care for yourself you will be on the journey towards wellness and finding peace with your skin.
Connect with the vitiligo community
Living with a rare disease can be isolating and frightening. Sometimes it may feel like no one else could ever understand what you are going through. Connecting with others in the vitiligo community and sharing your feelings with people who understand your struggles can help. It is empowering to know that you aren’t alone in your experience. Today, the vitiligo community is coming together like never before. People all over the world are gathering in person and online to support and learn from each other. There are Facebook groups, Instagram pages, membership networks, blogs and conferences all built to support those living with this disease. Learn more about Living Dappled’s membership network and others way to connect with vitiligo communities.
As you navigate your vitiligo diagnosis, you will probably be looking for resources online. Fortunately, there is a lot of information about vitiligo on the web. Unfortunately, there is also a lot of misinformation. Here is our guide to experts and resources that you can trust. For more resources and information about vitiligo, visit the Global Vitiligo Foundation’s website at https://globalvitiligofoundation.org/.
What were the most helpful resources and/or advice you found after your diagnosis?
Karen Ruffin is a writer and interior decorator in Atlanta, GA. She has had non-segmental vitiligo for 47 years, starting when she was 7. As a contributor to Living Dappled, she shares her journey and perspective on how to live well with vitiligo.