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Community Q&A: My Vitiligo Started When…

Community Q&A: My Vitiligo Started When…

Woman with vitiligo looking in mirror with hand raised to her face

Everyone has a different story about when and how their vitiligo started–and how it’s going. Sharing your story can be a helpful reminder that you aren’t alone in your experience with vitiligo. That’s why we’re so grateful to the Living Dappled community for sharing how their vitiligo started with us.

Whether your vitiligo first appeared at age 5 or 50, whether it stayed confined to one small spot or spread to many areas, a common thread running through every story is the profound impact it has had on people’s lives.

When and how did your vitiligo start? That’s the question we posed to our readers, and the stories poured in. Read our community’s answers below and join the conversation on Instagram.

Disclaimer: The following answers are the perspectives of readers and not endorsed by Living Dappled. Responses have been lightly edited with brackets where needed for clarity but are shared as is to respect the perspective of each contributor.

My vitiligo started when…

“When I was 26 years old; as it continued my husband refused to be seen with me without makeup and now we [are] divorced. [It] was hard at first but it was a blessing in disguise! I found me and finally love me again!”

“When I was 21. It was a rough time in my life but eventually I overcame [it,] stronger and loving myself even more.”

“….when my granny died. I was raised by her and it was the biggest loss for me.”

“Mine started [in my] mid-30s after the birth of my first daughter and developed significantly during [the] pregnancy of my second.”

“I was 23 and under the most stress I had ever been through at the time.”

“[When] I had my 2nd baby years ago.”

“I had a single spot for years. On my head when I was 7-8 years old. My hair turned white. I didn’t get any more until after I was diagnosed with Type 1 diabetes in my early 20s. After that the spots started. My sister and grandmother both had it. So it runs in the family.”

“I tried a facial scrub purchased from a farmers market and weeks after I started [it], vitiligo came [on] rapidly… just on my face and neck where I applied the scrub.”

“Mine started when my parents divorced, I was one year old. Since I remember, I have vitiligo in all areas, legs, arms, feet, hands, belly… and for the first time in 40 years I’m having a ‘fast’ recovery.”

“I was 12, [and] it started on my fingers after I punch[ed] a wall. [Then it started] spreading fast on both my hands. I would always wear hoodies [from] middle school through high school.”

“I was 1 day old.”

“I never remember not having it. I was told I was around 5 when it started to really show on my knees. I tried to cover it up with tanning lotion in my mid-teens but it was too much upkeep. I choose to embrace my skin; it’s me. If you don’t like it you can leave. I do feel it left some scars as I grew up in small town America; looks and stares were always the worst. I feel it really played a part in my confidence.”

“[I was] 26! And it has been a struggle since then but taught me so much and now I’m in a better place where I love my life!”

“At age 14 for me.”

“My twins were 3. Took my son to get a diagnosis and the doctor noticed a tiny spot on my daughter’s knee that I missed. So we left with a diagnosis for both.”

“When I was 1 year old, very early.”

“I was in my early 30s after a family trip to Cabo!”

“I was born with vitiligo.”

“It often starts after periods of stress. It did for me after I left my husband and no one in my family had ever done such a thing. It was hereditary – my dad had it. The first spot was on my elbow and I was HORRIFIED. Now l actually love my spots.”

“When I was 10 years old.”

“Eighteen months ago, when I had a massive autoimmune reaction to the Covid vaccine. I am now covered in patches and some of my hair literally turned white overnight. Trying to embrace the changes but it’s strange seeing a different version of me in the mirror.” 

“I took the vax to be able to go to my middle school. It triggered my autoimmune disease. I was 12.”

“Just before my 18th birthday. I had always tanned beautifully from the sun, but I tried a tanning bed so that I would be tanned for my prom. Spots appeared immediately on my feet, stomach and hands. At that time in my life I had just lost my childhood best friend to a car accident. Not sure if there is a causal relationship there or not but I think probably there is. My spots spread when I am stressed. I am getting more and more spotty by the day it seems lately as I navigate single motherhood to three tween/teens and work towards my degree. I am turning 40 this year and I haven’t quite learned to embrace my spots just yet, or how to manage my stress levels for that matter.”

Related: How to Decrease Stress and Why It Matters When You Live with Vitiligo

“[I was] 21 years old, [and it] started with a spot right under my eye and spread to a little spot by my nose. After having my first baby my face almost turned white and now at 28 years old after having my second baby I’m starting to notice small spots on my hands and chest. I was also diagnosed with hypothyroidism this year. I still do not embrace it, but [I am] hopeful that one day I will. I’ve learned to apply my makeup in under 10 minutes to cover my spots.”

“I was 8 or 9 and noticed a small spot on my inner thigh. Within a few years, I had spots on my knees, elbows, and wrists. It has been slow growth for much of my life (I’m 41 now), but the past few years have seen quite a bit of new spots appearing. I remember the first trip to my pediatrician. She knew exactly what it was, but she told me there were no real treatment options and that it would keep spreading. I was devastated.”

“My son who is 8 has had it since he was 2 1/2. I didn’t know what it was at first and didn’t get a diagnosis until he was 3.”

“When I was 36. I lived through a difficult period but now I am proud to be who I am. I accept my difference.”

“I was in my early 30s and had been on a lot of antibiotics.”

“[I] had a tiny spot on my leg [at] about age 22 then my grandpa died just days before my 40th birthday, [and] my armpits went white overnight. Then my pubic area, then neck, inner wrists, patch in my hair, around my eyes, back of neck…my children think it’s REALLY COOL! It shows up a lot when I’m tanned…I don’t mind it! There’s worse things you could get.”

“I was born with my vitiligo. There was a spot on my inner right thigh and then one appeared on the left inner thigh. Now it’s everywhere on me. [I’m] in my 40s [and have] had it all my life. Some days I love it and some days I don’t…it’s never easy. I was the only one with vitiligo in my small town growing up so I was made fun of a lot… I finally met people with vitiligo when I was about 30, so that was amazing for me. My vitiligo is like a copycat, what happens on one side happens on the other. [So it’s on] both knees, both feet, both armpits, both eyes, full stomach, etc. I find support groups are very helpful. I’d probably be further along in my healing process if we had them in the ‘80s and ‘90s…”

“When I was 11, after my first period.”

“My vitiligo started 4 years ago with a small spot under my lip; after 2 years other spots appeared on my eyelids, around my lips and on my hands. In my case it was caused by the death of two loved ones and by work stress. It has been an up and down of emotions, but I have learned to accept it.”

“I was 35 when a few small white spots appeared on my inner thighs. I had a few more small spots appear mostly on my torso over the next couple of years, but it didn’t spread like wildfire until I was sick with COVID at 39.”

“I was 5 years old when mine started to show up and my mom said she noticed it on my knees and face one day when we were in a swimming class and they didn’t know what it was until they took me to the doctor. Growing up my parents always thought I would be bullied by being different and sometimes I was but there’s been so many people who have told me while growing up how beautiful I am and now being 24 in April, I couldn’t imagine my life without my vitiligo. I’ve gotten treatments where it fully brought back my pigment in my knees but cost a lot to maintain and once I stopped treatment the spots would grow back.”

“When I was 39 years old and [I think] it must have started only due to big stress with my boss.”

“When I was 10. Felt like the only one in the world with it, although my grandma had it. It defined me. It prevented me from wearing short sleeves, shorts, anything that showed my spots. I was so self-conscious. Now 50 years later that makes me sad.”

“When I was 27 (in 2015), on my wrist. It was a little spot, now [it’s on] a lot of parts of my body. I was stressed and my immune system is not very strong.”

“My vitiligo started when I was 25 and [it] was after pregnancy, in 2009. [It] started as a small patch under my armpit.”

“When I was 12. Was skinning my knees in cheerleading and dance and thought it was just that. Then [it] spread to my feet and my hands. [It]…grew every year… Now at 34 I’m almost completely white.”

“Thirty-eight years ago.”

“I was 20 years [old] when mine started. It started on my lower legs. I refused to wear shorts. I now also have it on my lower stomach, one elbow and my hands. It’s taken me years to finally accept it.”

“Mine was in high school, and started on my knees.”

“My vitiligo started when I was 8 years old!”

“Mine started when I was 10 or 11 years old. [It] started around my eyes. By the time I reached adolescence I was deeply traumatized by it. Mom took me to a doctor who turned around and told me to wear boot polish! My confidence and self-esteem are like a tightrope, me on it and it’s precariously swaying in the wind. I want to fall off of it so many times.”

“I got my first white spot in my left boob when I was 25 years old and pregnant with my first child. After that, it’s been spreading and spreading.”

“At 21…[I] drunkenly tripped and fell and the scrapes on my knees never ‘properly’ healed. Now it’s all over my body and I wouldn’t change it for the world.”

Related: The Science Behind Why a Cut Can Turn Into Vitiligo

“I was 8 years old, [and] had just removed a cast from my right leg. [A] few months [later], [it] started as a small spot on my ankle and it just continued to grow all around my right foot. [I’m] a spotted foot queen.”

“I got ringworm on my hip at age 12 and it turned into my first spot, then spread to my chest, armpits and pelvic area. Now at age 20 my first spot on my hip is almost completely gone (which makes me surprisingly sad).”

“I was 3 or 4…[there was] a tiny dot on my eyelid that my mom noticed after my bath and thought I just didn’t wash my face properly. [Now it’s] 35 years later and I wouldn’t change a spot.”

“My daughter’s [vitiligo] showed up at age 4 right after she had pneumonia.”

“When I was a child (3 years). Now I’m 30 and I like it.”

“I was 6 years old.”

“When I had my first baby, just a little circle, [then] after my second [baby] my vitiligo [spread].”

“I was 12 and a spot showed up on my knee. And then the other knee soon after. They kept growing but we assumed they were from how often I skinned my knees playing volleyball and basketball until they started showing up [in] other places a couple of years later. It took a long time for it to spread to other parts of my body but once it did, it took off!”

“Age 5.”

“When I was a little girl. First, at the age of 6, the patch was just on my chin, then it disappeared and then it [grew] exponentially all of a sudden at the age of 11.”

“My vitiligo started last year. I didn’t know I had it because it started on the back of my neck which I couldn’t see. Then it spread to my face and upper body with a few small spots on [my] arms, hands, and feet.”

“When I was 12 years old.”

“When my nana passed away when I was 20 years old.”

“[In] 2020 [at] age 62 [I] noticed [it] under my arms.”

“[In my] mid-50s. Hard to get used to.”

“During pregnancy with my second child. When I was 37. I got it in the pelvic area. My midwife told me it was just due to hormones and would eventually fade. I knew it wouldn’t. My grandfather had it on his arms, hands and forehead. I thought it would spread to my face and hands, and therefore I worried a lot. I am 41 now. It hasn’t spread – yet. And if it did, I don’t think I would worry so much about it. I am much more relaxed about it now, which is nice.”

“I got my vitiligo when I was 32 years old, it started with a small patch on my right hand thumb. Now I am bichromatic and I am loving it.”

“I was in middle school. I fell off my bike or something and scratched my knees up pretty bad. That’s where my vitiligo first started showing. Here we are about 12 years later and it’s now pretty symmetrical on my knees, feet, hands, and elbows.”

“[In my] late 30s after I burned my thumb on the oven rack. It spread slowly initially and then through the years it waxes and wanes in terms of spread, [I] guess just like the flow of life.”

“…I started a relationship with a narcissist.”

“Mine came about when I was 13. Inner right thigh. Just continued to progress for a couple years and it was so hard for me. I’m 33 now and [it] still gets to me some, especially during summer months but as a mom I don’t want my kids to see that it stops me from anything so I just try to push forward.”

“My vitiligo started when I was 5 years old. It began on my eyelid and progressed as I got older. I went through a lot of ‘cures’ from people on the street stopping my parents and eventually me, until one day I was done. Now I’m 28 years old and have universal vitiligo.”

“When I was 13 years old.”

“[I was] 17.”

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