5 People with Vitiligo Open Up About What They Would Want Parents of Kids with the Skin Condition to Know
If you're new to navigating your child's vitiligo diagnosis, or just want to be prepared for any conversation, read these people's insights about growing up with the condition
Vitiligo, a disease that causes skin to lose pigment, has long been misunderstood and often, people with the condition reported feeling embarrassed or stigmatized due to people's lack of understanding. And while much progress has been made towards education recently (thanks to everything from top models on billboards to Barbie), navigating conversations around it can still feel foreign.
For parents whose children might be facing a vitiligo diagnosis, it can be hard to know where to start when it comes to navigating your kid’s questions — and those you might have as well.
We spoke to five people who have vitiligo to candidly share their experiences with the condition, as well as what they wish their parents, teachers and other adults in their life had known when they first were diagnosed.
Madinah Wilson-Anton
Occupation: State Legislator
Current age: 29
Age when diagnosed: 19
My vitiligo journey: My relationship with my vitiligo is constantly evolving. There were times when I wanted to cover it and hide it. Then I would get comfortable with it and even start to like it. Then the spots would change and I’d get new spots in more visible spots like my face and I’d be upset. Then I’d get used to them, and they become part of me. I love my skin. But it can be hard to love yourself when people come up to you and offer information on medicines and new technology to “fix” it when you’ve finally come to love it. I doubt my relationship with my vitiligo will be constant for the rest of my life. I do value the uniqueness of my skin and hope to continue to show others that #InOurSkinWeWin!
My advice: Let your children feel their emotions. I didn’t have vitiligo as a child, but even as an adult it was difficult to see my body changing so rapidly. It felt like everywhere I went people were staring at me or asking me about my skin. It impacted my self-esteem and my identity. At the same time, some people would tell me it wasn’t a big deal or that they liked it. Pretending that it doesn’t matter invalidates the very real, founded emotions that someone with vitiligo experiences. It made it hard for me to be honest about my emotions, because I felt wrong. Instead of telling your child or loved one how they should feel, listen to them. Validate their emotions. Show that you care and that they aren’t wrong for feeling however they feel. Support them and encourage them.
Related: What Is Vitiligo?
Jana De Vliegher
Occupation: DJ
Current age: 32
Age when diagnosed: 15
My vitiligo journey: After a long time of feeling very insecure about my vitiligo, and covering up every day, I realized that there are way worse things in life … so at the start of 2021 I posted a “coming out” photo on my socials. My vitiligo was very visible along with my story. To take it a step further, I changed my DJ name to Jana Vitiligo. I've received tons of positive reactions and am still receiving daily messages from other people with questions about how to accept their vitiligo or tips on how to cover it up. I'm happy to help and feel more free now than ever before!
My advice: I would say that it’s important to listen to the kids' own perspective on their vitiligo. I’ve been told a lot of times by loved ones that “it’s not that bad”— but for me it was! So this never reassured my feelings. It would have been more helpful to help me find ways to camouflage it or to let me vent on how I was feeling about it, instead of minimizing [my feelings].
Sheetal Surti
Occupation: Banking Professional
Current age: 43
Age when diagnosed: 7
My vitiligo journey: It's taken 30 years but I'm finally learning to accept and love my skin, as well as talk about it openly. I have universal vitiligo, which means I've completely lost all of my pigmentation. I felt like I'd lost a part of my identity with that too. But learning to speak out about it has helped me find myself again. I no longer feel any shame in having this condition. Being able to advocate for vitiligo has also meant I've been able to help others who may be struggling with this condition.
My advice: For parents: Be your child's biggest cheerleader. I know it's difficult not to let the worry seep in but trust me when I say your child will pick up on that worry, and it will cause them to feel that vitiligo is a bad thing which will cause endless issues in the future. Speak to them openly, ask them how they feel about the change that is happening. And please don't assume they need to be “fixed.” For teachers: Don't be afraid to speak to the parents and child about their condition, but in a sensitive manner. Ask what you can do in your role to help raise awareness among the children and fellow teachers. Ask what you can do to help not make them feel different.
Related: 16 Celebrities Open Up About Their Skin Conditions in Hopes of Helping Others
Karlowba Adams Powell
Occupation: Legal Professional
Current age: 47
Age when diagnosed: 10
My vitiligo journey: I was diagnosed with vitiligo when I was 10 years old. My mother was very overprotective and immediately got makeup for me to cover up the tiny area of vitiligo on my face. My vitiligo initially was very limited on my face, and did not aggressively spread to other parts of my body until after my knee surgery in 1996.. My face is now almost completely white, along with my legs, hips area, chest, upper back, and arms.
I did not like applying so much makeup daily. I literally took every opportunity not to wear makeup, but my career caused me to be in the public eye a lot, so I continued to wear makeup to cover my face. Although I have always been very confident, I wanted to be able to do my job without distraction. However, when the pandemic hit in 2020, I was at home and no longer working. I made up my mind then that I was grateful to be alive and that I was no longer going to wear makeup. Instead, I was going to encourage, inspire, and motivate others to embrace their differences, whatever they may be, and know that “different” is beautiful!
So, on January 22, 2021 — my 45th birthday — I revealed my true authentic self in a Facebook post and I never looked back. I haven’t covered my face in two years, and I never will again! I have thrived with vitiligo for 37 years.
My advice: Follow the lead of the child. Vitiligo is very much a social disorder; it can make you or break you, but that all depends on how the child perceives themselves and how comfortable they are with their vitiligo. Do not just assume they are ashamed of their vitiligo.
Sometimes parents and teachers can be too overprotective, because we all know that kids can be cruel. First, observe the child with vitiligo and see how they interact with their peers and how they feel about their vitiligo. If they are confident, sit back and enjoy the ride! Do not protect them or interfere with them in social settings, or influence their perception of their self-image. If they are uncomfortable, put on your capes and protect them from the cruel kids that may tease them for being different.
Second, encourage the child with vitiligo to trust their uniqueness! Third, tell them that their uniqueness is their superpower! Fourth, encourage them to be their authentic self. Fifth, educate them on vitiligo and educate their classmates as well. Lastly, tell the child with vitiligo to never try to fit in when they were chosen by God to stand out!
Related: Why This Author Wrote a Kids’ Book to Help People Understand, Embrace Skin Differences
Omar Sharife
Occupation: Actor
Current age: 44
Age when diagnosed: Late teens
My vitiligo journey: Vitiligo started for me with a heart-shaped spot on the middle of my forehead in my late teens and early 20s.
At that time, medical treatment for me included using a UV lamp to burn and blister my skin in hopes that my skin would repigment.
My vitiligo slowly progressed for me year after year from the tips of my fingers and feet, up to my neck then again on my face in my late 30s.
My journey of acceptance has been long and tumultuous and, if I’m honest, that journey is continuous as my vitiligo continues to evolve. I’ve gone through wanting to treat my vitiligo, to hiding it and becoming depressed and anxious to the point that going out in public was difficult. The change came for me when I was able to meet a group of others with vitiligo and talk about our journeys. I realized I was not alone in my feelings and this freed me from putting myself down for being different. I now embrace my vitiligo and continue to push all the boundaries that I allowed anxiety to limit in my life for many years.
My advice: Educate yourself on what vitiligo is, what treatments are available and realize that there is no cure. Connect with vitiligo organizations and meet with others who have vitiligo to understand their journey. Hearing other vitiligo stories is so important for understanding and supporting the physical and mental health journey your child is and will go through. When it comes to creating a more inclusive environment, educate those around your child about what vitiligo is and how to be kind to someone who has it. Many people, including those who have vitiligo, are misinformed or undereducated about the condition. Knowledge and understanding is power.
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