Vitiligo

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    Vitiligo FAQ: What You Need to Know About This Skin Condition

    Were you recently diagnosed with vitiligo? Does someone in your life have spots and you are curious? Read below for answers to the most asked questions. What is vitiligo? Vitiligo is a condition that results in white spots on the skin, where they have lost their pigment. It is progressive, meaning as the person ages, they will likely continue to lose more pigment. Is vitiligo contagious? Vitiligo is not contagious. You cannot catch it from touching or being near someone else with vitiligo. Vitiligo is a skin condition, but not an infectious or transmissible condition. What causes vitiligo? Vitiligo is an auto-immune disorder. Our immune systems are overactive at the skin. The immune system mistakenly attacks the skin, destroying melanocytes, or pigment-producing cells. Our skin can then no longer produce melanin in these areas, resulting in visible white spots, completely devoid of pigment. Spots are typically splotchy, rather than perfectly round. Vitiligo also tends to be symmetrical across the body, meaning if you have vitiligo on your right hand, you will likely also have it on your left hand, though the spots won’t look identical. Is vitiligo dangerous or life-threatening? Typically, no. Individuals with vitiligo should get their thyroid checked regularly, since it is sometimes associated with thyroid problems, but that is the main risk factor for actual illness. Otherwise, vitiligo is considered primarily a “cosmetic condition.” Many with vitiligo are more diligent about wearing sunscreen and covering up, since much of their skin lacks natural protection from the sun. On the other hand, some research supports that vitiligo might lower your risk for skin and some other cancers, since the immune system is already so present and over-active at the melanocytes, or skin. How quickly do the spots expand or “spread?” This depends on the individual. For some people, vitiligo spreads quickly, and for others, it spreads more slowly. I would place my vitiligo on the slower end of the spectrum. I have distinct spots, and discover new ones every year, but I would estimate that vitiligo covers only about 20% of my body. And this is after having vitiligo for 20-some years. Some individuals go from 0% to 100% within a few years. It really varies quite a bit from one immune system and body to another. Are there treatments? Is there a cure for vitiligo? There is no cure for vitiligo to get complete repigmentation, but there are treatment options if the individual desires to go down the route. Treatments include steroid creams and UV light treatments, among others. Some people choose make-up to cover their spots, and others choose to not cover their spots at all. As a child, I did both steroid creams and light treatment, and I got some repigmentation, but now I am in the latter group, where my “treatment” is acceptance of my vitiligo. Oddly enough, years after stopping treatments, I still got some random repigmentation, while other parts of my skin lost pigment. Immune systems and bodies can be surprising. What are the best vitiligo resources out there? Two of my favorite resources are: Blog and Online Community: Living Dappled Book: “Bodies Are Cool” by Tyler Feder There are also several foundations and charities out there for vitiligo, but for me, their focus on finding a cure does not align with my acceptance of my skin and spots. For others, these communities and their research may be helpful.

    'Bodies Are Cool' Children's Book by Tyler Feder Celebrates Difference

    Working at a public library, I encounter a lot of books. And I know you shouldn’t judge a book by its cover, but I do see a lot of covers as I’m shelving. I can’t help but judge them. One picture book that instantly caught my eye was “Bodies Are Cool,” by Tyler Feder. Published in 2021, this book takes body positivity to a whole new level. The cover alone features various bodies, of different sizes, different skin colors, having scars or stretch marks, using a hearing aid or insulin pump, and covered in various amounts of hair. The book shows even more different bodies throughout. Pages focus on height, eyes, tummies, scars, and more, all while proclaiming that “All bodies are good bodies! Bodies are cool!” One page in particular features skin differences. The text reads, “Freckled bodies, dotted bodies, rosy-patched or speckled bodies, dark-skin-swirled-with-light-skin bodies. Bodies are cool!” while each person illustrated also enjoys speckled or swirled ice cream. Not only are the illustrations bright and fun, but they show skin differences rarely seen in illustrations, if ever before. Even beyond this page, several illustrations feature spotted, vitiligo-like skin. This is skin that looks more like mine. When I was diagnosed with vitiligo as a child, my mom was handed a pamphlet of clinical information from the dermatologist and sent on her way. She later told me that this was terrifying, so she looked elsewhere for personal stories. She found news anchor, Lee Thomas’s, memoir, but I was too young to be interested in that type of book. We did find a picture book, “Different Just Like Me,” which was about differences among children, but despite it being inspired by vitiligo, the illustrations did not ever show vitiligo. Representation of skin and other visual body differences was improving, but certainly still lacking. This is why books like “Bodies Are Cool” are such a huge step forward. It has representation that’s just existing, rather than making it so heavily a difference. It presents diverse bodies as the natural state of being, which is how bodies are in the real world and how it should be in literature, especially children’s literature. For me, seeing vitiligo in a picture book is stunning. This book is a radical form of acceptance of all bodies. Everyone, of all ages, will hopefully find themselves represented somewhere. One of my other favorite pages shows a group of people at a dance class. The text reads, “Round bodies, muscled bodies, curvy curves and straight bodies, jiggly-wiggly fat bodies. Bodies are cool!” Most of the people in the illustration break the mold of a “traditional” ballet dancer somehow, whether that is being in a larger body, being male presenting, using a prosthetic leg, having messy hair, or having no hair. I have danced my whole life and recently experienced weight gain, which made me feel less comfortable going to a ballet class. Yet, here is a page in a picture book showing me all bodies can do ballet, and all bodies are cool. I’m not surprised that here in Illinois, “Bodies Are Cool” is among the nominees for the 2023 Monarch Award, voted on by readers K-3. If I was eligible to vote, I would choose this book in an instant. We must keep writing and illustrating diverse bodies, until books like this are the norm. In the meantime, “Bodies Are Cool” should be in every library, every classroom, and every home.

    Why Spring Makes Me Feel Beautiful as a Person With Vitiligo

    Some of my favorite parts of spring are the budding flowers on the trees, the smell of the brightening green grass, and the sounds of birds returning North. Spring is also interesting as a person with vitiligo. As it gets sunnier and my skin starts to tan, I get to see how my vitiligo spots have changed or what new spots have appeared. As a child, still new to the vitiligo experience, I was terrified of finding new spots. Though they appeared gradually, I tended to only notice them when I tried on a new tank top or was significantly tan from a trip to the pool. When I found a new spot, I would cry. The tears didn’t last long before I accepted it and moved on, but there was still that initial reaction. I was afraid of being different and being stared at by other kids for having a visible difference. So much has changed now that I’ve gotten older and more comfortable in my skin, both figuratively and literally. I went for a walk earlier today because the weather was perfect, and I found a series of new spots on top of my left foot. I also noticed how the vitiligo has progressed on my hands. Instead of crying, I was excited. My spots are so interesting and beautiful. Not to mention, there is a lot more public awareness of vitiligo now than when I was a kid, which has surely also contributed to this change. Many of my old spots have re-pigmented over the years. This might be due to some UV light treatment we did when I was a kid, or because immune systems are random, and bodies continually change. Vitiligo is unpredictable. I don’t know where or how fast I will lose or regain pigment. I don’t know if new spots will always keep appearing over the years, though they likely will. The consistent change is that I love my vitiligo now. It makes me feel interesting and beautiful. If anything, it adds to my confidence. The potential to find new spots is now one of my other favorite parts of spring.

    Finding Representation Living With Vitiligo

    They now make a Barbie Doll with vitiligo. A model with vitiligo walked the Victoria’s Secret Fashion Show in 2018. You can even add vitiligo to your avatar in Animal Crossing. As someone who has had vitiligo, an autoimmune skin condition that causes pigment loss and white skin patches, for almost 20 years, I find myself asking, when did vitiligo become cool? I don’t mean to suggest this newfound coolness for vitiligo is bad. In fact, it’s amazing. More representation of different bodies and different skin will always be seen as a positive by me. I’m sure it’s comforting to kids and adults newly developing vitiligo. Yet still, it’s an odd experience though to watch this change occur. I have had vitiligo since I was 6 years old. It started as a raised red circle on my stomach that turned into a white patch. Then, the white patches continued to appear on my body, especially if there was some trauma to the skin. When I fell down and scraped my knees badly, my knees turned white within a few months. Where clothes continually rubbed, like my armpits and inner thighs, the skin lost its pigment. Several doctors, including my pediatrician, did not know what was causing my spots. It wasn’t until we went to a specialized dermatologist that we first heard the word “vitiligo.” And it was overwhelming. We didn’t know how fast it would progress or how much pigment I would lose. Not that vitiligo typically causes serious health problems, though it can affect your thyroid and I have had mine checked, but people do stare when your skin is not one uniform color. As a kid, my classmates asked why my knees where spotted. At dance competitions and the local pool, other kids and even adults starred at my splotchy stomach. There were definitely times when I got upset about having vitiligo and just wanted “normal” skin, so no one would stare. I don’t blame people for staring; people stare when they see something different and are curious. I’m guilty of it myself, but I always appreciated when people just asked what the spots were instead of just staring. My family and I ended up doing some light treatments on my spots during middle school. This was less because of people staring at my spots and more because of a fear of not having pigment to protect my skin and insides, though both were factors in the decision. This treatment involved driving 45minutes every other week to a dermatology office where they essentially purposely gave me sunburns on my spots with narrowband ultraviolet B. It’s safe, but was painful at times, just like a really bad sunburn. And it worked somewhat. Gradually, my stomach re-pigmented and my armpits filled in some. But my knees and left eyelid stayed spotted. Oddly though, years after stopping the light treatments, many more of my spots have filled in. For example, now my knees are completely re-pigmented. I don’t know if these changes were because of the light treatment or just my immune system being random, and I’ll never know. At the same time, I lost pigment on my hands and wrists. Like I said, immune systems are weird. I wish there had been a vitiligo Barbie when I was a kid. Maybe it would have helped me feel comfortable in my skin sooner. I was typically fine with my vitiligo growing up and didn’t mind it, but there were nights when I cried if I found a new spot. Now, as an adult, I’m totally fine with my vitiligo and I’d even venture to say I love how unique and beautiful the spots can be. Sometimes I even miss the spots that have re-pigmented. But maybe this comfort would have come easier if I was more exposed to representations of vitiligo. And maybe if others had been more exposed to vitiligo, they would have been less likely to stare out of curiosity at me. So much more often now, when I answer that “the spots are vitiligo,” people nod in understanding and have heard of it before. This is why I find myself asking, “When did vitiligo become cool?” and more importantly, “Why didn’t it happen sooner?” This is one reason why diverse representation of bodies matter.

    Community Voices
    Erika Page

    Reframing Confidence as Someone Living with Vitiligo

    Confidence. I have a love-hate relationship with this word. I love the idea of confidence and the powerful, stiletto-wearing CEO who pops into my head when I think of the word. What I don’t love is that the very idea of confidence often makes so many people feel less than. They’ve given up on the idea they could ever be confident, because of pre-conceived notions about what makes someone confident. I was, and often still am, one of those people. As a woman who grew up with vitiligo, I know what it’s like to struggle with self-acceptance, self-esteem and comparison. To me, confidence always looked a certain way – skinny, tan, beautiful, happy, positive, charming and bold. I was none of those things. I was a shy, awkward and gawky girl with spots all over her body. Fast forward a decade or more, and today I’m still sometimes a shy, awkward and gawky girl. But my spots are gone since vitiligo took over my skin. And my confidence is in an entirely different place. In that decade, I’ve met the girls who are those things I thought you needed to be confident. And guess what? Standing here today, I have more confidence than any of them. And that’s simply because I reworked my perspective and understanding of what confidence really means. Confidence isn’t conditional Gosh, I believed this for so many years. If only I were prettier, I would be confident. If only I were cooler, I would be confident. If only I didn’t have spots, I would be confident. Listen closely to what I’m going to say next: this is a lie. Confidence is not conditional upon any qualifications. In fact, I’m willing to bet there are people out there who have the qualifications we seek who are still struggling with insecurity. You can be confident today, exactly as you are and who you are. Thinking you can’t is an excuse holding you back. Try finding one thing you love about yourself you can celebrate today – and go all in. Confidence takes practice How easily we dismiss confidence as something unachievable. You may think, “That’s something other people have, that’s not me.” Hello, this is your confidence calling! Confidence isn’t something you whip up overnight. It’s something that takes practice. Remember learning how to ride a bike? No one masters riding a bike without practice. The same applies to your new skin. You might not feel confident in your skin, but give it a chance and you might learn to feel confident. For me, confidence comes in baby steps. Wearing less makeup and then going makeup-free to the grocery store one night led to me feeling good about going to the gym without makeup on a regular basis. Take one small step towards confidence and see how it feels. Confidence doesn’t always feel confident For most of my life, I thought I wasn’t confident because I didn’t feel confident. But that wasn’t the case – I just wasn’t giving myself credit for having that confidence. Growing up, I would wear shorts and dresses even though the stares I would get made me uncomfortable. It was just too hot to wear anything else. From time to time, people would comment on how confident I was despite my skin – and I was always shocked. They didn’t know I had spent an hour panicking and crying before I left the house. I wasn’t confident – I just didn’t feel like I had another choice. Until someone recently reminded me I did have a choice. I could have chosen to wear pants. I also could have chosen to stay home. But I made the choice to wear my shorts anyway, and that took confidence. No, I didn’t necessarily feel confident. But each time I wore shorts, I felt better about wearing shorts in the future. In other words, choosing the idea of confidence and acting on it inspired true feelings of confidence. Confidence involves only one opinion – yours I think the thing I’ve gotten wrong about confidence for so many years is I’ve looked externally for it. In other words, I turned to others for it. If I was surrounded by friends, if people said hi to me, if I got compliments – then I had confidence. But this way of seeking it is fleeting, because the moment someone doesn’t say exactly the right thing, you begin to spiral inside. Here’s the thing: it isn’t about how others feel about you. Confidence is about how you feel about yourself. Confidence is contagious Have you ever noticed this? I had a gorgeous, life-of-the-party friend in college who just breathed confidence – and I loved that about her. As a spotted, uncomfortable twenty-something, I was the complete opposite. And yet, when we spent time together, I started standing a little straighter, being a little bolder and loving myself a little more. Spending time around this confident friend made me feel more confident. Her confidence was contagious. Who are the people in your life? Are they confident? Can you start spending time around people who are more confident? I wonder how intentionally putting confident souls around you might change your life. Confidence doesn’t have to start with your skin Growing up, I thought I had to focus on loving my skin in order to find confidence in my skin. Yet I struggled and failed to love my skin, time and time again. Then I decided to launch a blog about vitiligo and turn it into a business. It was the scariest thing I have ever done, and yet today I am a successful blogger with the confidence to tell a story. In other words, stepping out of my comfort zone and trying something new I had never done before gave me confidence. My confidence in who I am grew – and the skin I’m in. If you’re struggling to find confidence, find even one way to push yourself out of your comfort zone and watch the benefits spill over into other areas of your life. Confidence is a choice Here’s the thing: you can choose confidence. Before you argue, hear me out. It is a choice because it can be created and manufactured by taking actions that build confidence. You can choose to wear your shorts even though people will stare. You can choose to swim in a bikini even though you might look different. By making those choices, you are deciding to flex your confidence muscle and build the life you want. By default, that’s confidence. Eventually you might even feel it too.

    Community Voices
    Erika Page

    Finding Body Confidence With Vitiligo

    Standing in front of the mirror today, I hardly recognize the girl I was as a child. The blonde hair and tan skin are gone, replaced by white strands of hair and ghostly white skin. At least, that’s what I really look like today. But the world only sees my dark brown hair dye and tanner – because that’s all I let them see. Vitiligo, a skin disease that causes loss of pigment, has taken 100% of my skin color and now part of my hair color. I don’t expect you to understand how that feels – because the chances of this happening are less than .01 percent. In other words, it’s unimaginable. And yet, it happened to me. And after 20 years, I’m still trying to mentally grasp that change. It can be hard to know “who you are” when your body is changing into something you don’t want it to be. Over the years, I’ve learned, often the hard way, how to focus on who I am instead of what I look like. Here’s how I found – and continue to find – the girl underneath my skin. Celebrate often Celebrating my life and the things that happen in it are a way to positively reflect on who I am. When I look in the mirror, I see the girl with vitiligo. But when I look inside, I see the girl who loves her husband and family, works hard for the things she’s passionate about and puts intention into the life around her. That’s who I am, and celebrating those things reminds me of that fact. For a few years, I kept a happiness journal, writing three things each day I was happy about or grateful for – my mini celebrations. Today, my husband and I have “red plate nights” where we celebrate each other’s accomplishments – big or small – with a red plate for dinner. And each time I’m feeling low, I sit down and make a list of all the things I have to celebrate in my life. These are the things that make up who I am and are worth far more than a glance in the mirror. Avoid comparison Comparison can be detrimental to your sense of self – and yet it so easily creeps in and alters your state of mind. I used to frequently compare myself to the girls around me, to models on Instagram and even to my imaginary self without vitiligo. Crowds were particularly tricky – I was quick to start watching the people around me, and comparison would easily follow. In every way, I fell short of what I thought a “perfect” girl looked like. And yet, no amount of comparison was going to change who I am. Today I take care to avoid mindlessly scrolling through social. I also try to focus on having an attitude of gratitude and put a lot of intention into taking care of my body to make self-love a priority – and toss comparison aside. Live in the moment Have you ever missed out on something because you couldn’t get out of your head? I certainly have. Living with vitiligo can make you feel like the ugliest person in the room – and the stares only reinforce your worst fear. Add this continuous stream of anxiety-ridden, self-conscious thoughts to any social activity and you wonder how you function. That was me. However, while I was consumed by anxiety, life was passing me by, moment by moment. Life’s milestones, big or small, can be interrupted by your life with vitiligo – or you can choose to live in them. It’s not always easy to quell the anxiety and focus on the moment at hand, but these are the minutes and memories you won’t get back. How do you live in the moment? That’s something I’m still working on myself, but I believe that the intention to do so is a place to start. Do the things you love I often find that when I’m doing the things I love, time flies the fastest – without me even noticing. These are the things that make me feel most alive – and have become things that are part of my identity. Two of my favorites? Being a blogger and a wife. Nothing passes the time like writing for Living Dappled or spending an afternoon with my husband. Pouring my time and energy into the things I love reminds me of who I am and why I matter. Face your fears — one step at a time As a child, I loved to swim. And yet as vitiligo slowly took over my body, I found myself avoiding the water at all costs. I didn’t need to feel any more insecure than I already did – and nothing made me feel worse about my body than a bathing suit. As my vitiligo took over my body, I started to wear tanner – and eventually made my way back to the beach. At first, I would panic about my tanner being less than perfect. But over the years, I’ve learned to enjoy the moment and let “how I look” go as much as possible. It took baby steps – and lots of encouragement – to get back into the water. But I’m so glad I did because it was part of who I am. Photo by Shawna Simmons

    Community Voices

    Summer time heat and humidity

    It breaks my heart that I can't go out and play with my grand kids, I was always outside and going camping or fishing, I went to my grand sons baseball tournament for the day and it took me down completely for two weeks and I'm really not back to half of my self, well my new self. Adjusting to this has been life altering and I struggle every day. Having vitiligo doesn't help either. But I wake up every day wondering what my adventure is going to be like. Thanks for being there Mighty worriers

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    Community Voices

    Hindsight

    I think the scariest thought is not that I have to live with chronic illness now, but that I can trace my symptoms back years and never noticed it. Perhaps I never wanted to notice it.

    My life’s purpose was the hustle - to get good grades, be the best, get a good job, and work hard to pay my parents back for the tremendous sacrifices they have made for us. Everyone struggles from time to time. I’d get over it.

    Noble? Perhaps. But it’s true that you can’t help others when you are running on empty. And I got to the point where I had not only run out of gas but I’d jumped out of the car and started pushing it up the hill only to keep going.

    A passing statement uttered by my doctor has made me pause and kept me up at nights. I was lamenting how suddenly all of this occurred to me, what I had possibly done wrong, and was there anything I could do to fix it. If it began suddenly, it meant that there was a beginning, a reason; and reasons have answers and all beginnings have an end — don’t they?

    “If you think back, you might see that you’ve had issues all along.”

    I did. He was right. But I forgot them for a reason. I avoided them purposefully, ignored them faithfully. Because I didn’t want to live a life focused on the struggle. Not then, and not now.

    As I lie awake again tonight, completely exhausted and unable to sleep, I’m brought back again to those words. And the memories I had eagerly attempted to erase mock me. I should’ve seen this coming. If I had just taken better care of myself, maybe I could have defied my genetics, my fate.

    But then, I realize that I have the last laugh. Because I am here; in spite of the pain, in spite of my past, and in spite of my problems.

    I am here and I am stronger than ever.

    I am mighty.

    #iammighty #AutoimmuneImmunodeficiency #AutoimmunePancreatitis #ExocrinePancreaticInsufficiency #ChronicPancreatitis #PrimaryImmunodeficiency #sjogrens #ChronicIllness #ChronicPain #CheerMeOn #Vitiligo #CrohnsDisease #CeliacDisease

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