Fairy Lashes & Vitiligo

by This is Carrie on March 28, 2011

Two summers ago Pumpkin was diagnosed with Vitiligo, a disorder that causes depigmentation on patches of skin (the same disorder made famous by Michael Jackson).  Over the past two years she has continued to lose freckles on her right cheek as well as the color in her right eyelashes as the patch has spread from right under her eye down to her lips.  When she first noticed her special white lashes, we told her they looked like beautiful fairy lashes.  She agreed for a while.  But just the other day, she expressed her dislike of those special, fairy lashes.  I reassured her that when she gets older, she can experience the magic of mascara.  Luckily, that seemed to calm her fears.

While there is no cure for the disorder, keeping her out of the sun keeps her skin light and the patches less noticeable.  There are treatments (creams, light treatments, etc) that have had some success in repigmentation, but we have yet to try them for fear it will give her more reason to be self conscious.  I don’t want her to think she needs to be “fixed.”  But, if the treatments worked, it could save her from some mild heartache as a teenager, so I constantly wonder if I’ve made the right decision.

We all want our children to be completely happy and healthy, but if I had to pick a childhood disorder or disease for my child, one that can be handled with some pricey sunscreen and maybe some early makeup lessons is one I’d choose any day.

P.S. If anyone has had experience with Vitiligo, I’d love to hear about it in the comments.

1-5-2015 UPDATE

First of all, thank you to everyone who has left kind comments on this post. The mean the world to me and my daughter (who is now nine years old).  We were recently at the dermatologist (for another issue) and the doctor rechecked her vitiligo and also checked in with her on not only the physical toll of the disease but also the emotional toll it was taking.  She laid out the treatment options and my sweet daughter said “My vitiligo is like my red hair, my freckles and my glasses. It’s what makes me unique and I don’t want to change that.” The doctor smiled and I hoped she really meant what she said. After seeing photos of Chantelle

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{ 44 comments }

Chris March 28, 2011 at 4:01 pm

First of all, I totally love the fairy lashes!!

Secondly, I was diagnosed with vitiligo about seven years ago. I sort of freaked out at first, had a bottle of champagne and a good cry, and haven’t really thought about it since then. It started on the palms of my hands, where I didn’t really notice it, and has been spreading over my hands, wrists, legs, and trunk. My husband loves me like crazy and doesn’t in any way seem to find me any less attractive for it, and I even managed to get an awesome kiddo out of it. It hasn’t really negatively impacted me at all, and even though it’s on my hands and incredibly visible (especially when i have a tan, which is nearly year-round, since I live in southern California), almost no one notices it. It does mean I can’t get photofacials, it turns out, as most dermatologists are afraid to practice anything of the sort on vitiligo patients, but that’s just teaching me to wear my sunblock more often. I also tend to stay away from really vivid nail polish colors, but that’s probably just as well, because I’m terrible about removing polish in a timely fashion.

My nephew has it, too, and seemed to get a lot out of this video I found on the vitiligo support forums: http://www.youtube.com/watch?v=CbrMS6evGFI

There’s some interesting info here, too, which is helping me prepare for how to talk about it with my daughter if she develops it later. http://www.vitiligosupport.org/

I’m totally available if there’s anything I can contribute to your conversations, too.

Chris March 28, 2011 at 4:03 pm

side note: people with vitiligo are more susceptible to other autoimmune disorders, which i found out when i came down with hypothyroidism post-pregnancy. something to keep an eye out for, if she’s ever feeling really fatigued and exhibiting depression-like symptoms. I thought I had post-partum until my doctor suggested we check my T3 levels. Now I take one pill a day and am pretty much back at normal. No biggie, just something to be on the lookout for.

Maggie March 28, 2011 at 4:24 pm

I think her lashes look pretty rockin 🙂
How did you discover that she had this condition?

Marilyn March 28, 2011 at 4:26 pm

I’d probably start her on mascara now if it’s frustrating for her, as it’s the only part that people can particularly notice. I’ve heard there is a new 28 day mascara you only put on once a month. That might be easiest for a kid.

It’s not really the same as letting her wear lipstick out, you could say, highlight her hair at the same time and tell her it’s just not a big deal and it’s okay if she wants to change up her look, instead of making it more like Hey, your eyelashes are freaky and you should fix that big problem. Just, hey, if you wanna change up your look here is how.

Megan March 28, 2011 at 4:50 pm

My 17 yr old daughter also has vitiligo. She is not bothered, but also does not really have it anywhere super visible. When i showed her your girlies photo, she said; “thats legit!”–then said mascara would also be her solution. I agree with you. We parents walk a fine line between ‘hearing’ their concerns and trying to minimize the issue at hand. All kiddos want is to be ‘the same’ Poo that shes bummed about this little inconsistency.

Mia March 28, 2011 at 5:52 pm

You obviously aren’t playing enough MJ at your house. : )

d Reply:

idiot. save the non funny attempts at funny for facebook

Kathya March 28, 2011 at 6:09 pm

My father had vitiligo as well, but only in one his feet and inside his arm.
We come from Bolivia and you can find a flower that it is fucsia and can rub it in the area and it will eventually help to get the color back. my dad tried it for years and the one mark on his feet was almost gone.
I have not seem that flower here in Michigan but only in Key West.
I hope God gives you all the wisdom to feel your girl’s heart about this problem.
It is challenging and sometimes heart breaking for a mom to try to make our girls feel good about something like this.
Prayers your way.

sarai March 28, 2011 at 6:25 pm

I think her lashes are beautiful! Wish I had them…so unique.

Catherine March 28, 2011 at 7:45 pm

It sounds like you are the ‘perfect amount’ of worried. You are obviously a very conscientious mama. I had something similiar growing up and while hard at the time, I’m glad I went through it. It humbled me in a way I suppose – but in a good way; a way that helped me understand people better. She will be FINE!

sara March 28, 2011 at 8:47 pm

The first thing I thought when the picture came up was that the sun was hitting her face at such a pretty angle. I forgot completely about the vitiligo and didn’t read your heading. Just thought she was lit by the sun 🙂 And I agree with Catherine – you are just the right amount of worried – any more or less wouldn’t be right for you or Pumpkin.

aj March 28, 2011 at 11:24 pm

wish i can find someone who can help me with my fears that my vitiligo would progress.. e-mail me please jayespartero@gmail.com..;c

adrienne
Twitter: babytoolkit
March 29, 2011 at 9:22 am

I don’t have Vitiligo, but do have another rare skin condition that is apparent.

You’re right not to emphasize correction of the condition at her present age. It’s really important that she knows you find her beautiful without change or adornment. Others, strangers even, will not hesitate to suggest that she could be improved with some cosmetic solution or simple cure.

The ongoing public commentary on a skin condition is hard to weather through adolescence, so you’re wise to consider what messages you’re sending now.

In some regards, she’s going to be Van Gogh’s white iris (among the field of purples) her whole life. My problematic skin reminded me that I was made of strong stuff. It taught me not to judge appearances too quickly and to listen carefully to new people or people marked different.

I learned that it’s not only okay to be different, but that everyone feels on the outside of mainstream for one reason or another at different points in life.

With her effervescence and kind heart, people will associate these fairy lashes with hardcore awesome. She can define this condition for the people around her rather than having it define her: “Oh, vitiligo? One of my favorite people has that, and it’s not a big deal.”

That doesn’t mean there won’t be hard times, but if she knows you love her appearance and find it uniquely beautiful, she’ll weather the turbulence of adolescence much better.

Ali Reply:

You said that beautifully and I goit teary reading it. 2 of my kids were bon with ClubFoot and they are just realizing the harsh reality of people and judgment. your words helped me. thanks. And Carrie CAN’T WAIT T SEE YOU and all your adorale kiddos!
~Ali

tamra March 29, 2011 at 10:07 am

oooh, i love love the non-pigmented eyelashes. I think it is so beautiful. Be careful, she seriously might start a trend. In high school, i used to tint my eyelashes (you can get it done at waxing places that do eyebrows) because they were so blonde and it made it easier than using mascara, especially with as much sports as I did. But, oh, seriously, her eyelashes are so beautiful as they are.

lera March 29, 2011 at 2:25 pm

Most of my 7 siblings have vitiligo. I think I have developed a small patch on my cheek, but I haven’t had it diagnosed yet. My nephew has started with it and I thought my son did, but the doctor diagnosed his as pityriasis alba and his has since cleared up. One of my sisters (she just turned 34) has it terribly. All over her faces, neck, chest, hands, arms, etc. I feel terrible for her because, like you said, there is nothing you can do for it. She can hide a lot with makeup, but she gets rude comments and stares.

I hope your daughter’s is contained. I like her eyelashes. I’ve never seen it there!

KathiD March 29, 2011 at 8:41 pm

She is beautiful inside and out! I trust your instincts to do the best thing always for your brood. I remember kids teasing me for having freckles–it’s always something, right? But nothing could detract from the beauty of my little Pumpkin, not EVER!

PaulaT March 30, 2011 at 12:06 am

Hi Carrie! This is my first time commenting on your blog, I believe, although I’ve been reading for more than a year! You’ve inspired me to start running. And just this last month I ran my first 5k!! I love reading about your adventures.

My brother was diagnosed with vitiligo while on his mission in Portugal. Although it doesn’t affect his physical health, I was worried about him emotionally. However, Heavenly Father gives us challenges because it gives us an opportunity to learn something and to then turn around and help and sympathize with people in similar situations. It humbled the entire family and we were witnesses of his growing testimony and trust in the Lord. After seaking medical help and fasting and praying, his vitiligo did not spread and in fact, became less noticeable. Something that helped me was to pray to feel peace that my brother’s self-esteem and faith would continue strong…and it has!! I know your little one is precious and that Heavenly Father will always help her feel special and loved 🙂

Amanda March 30, 2011 at 7:42 am

I think a lot that has been said her is valid but I think we also have to remember what it feels like to be Pumpkin’s age and how it feels to feel “different than the norm” and how it may feel as she gets older. It’s awful and kids can be so unkind.

You (as you are) have to walk the fine line between letting her know she’s beautiful as is but not so much that you make her feel worse by not allowing her to “fix” it if it’s causing her grief. I think it’s a wonderful thing to teach our children to be comfortable in their bodies and stress the whole “free to be you and me” but did we really truly embrace that as youths? Sure I wanted to stray a bit from the norm as a kid but I also desperately wanted to be accepted. There are few teens and pre-teens who can let differences (physical, etc) roll off their back if their the ones being picked out. It’s hard to grasp and be okay with the whole “It’s okay to be different” when you’re not getting that message from your peers.

My 15 mo. daughter has a lack of pigmentation in a patch of hair on the top of her head. The pediatrician remarked on it at her 12 month visit that it would gray early and that “mama will be able to hook you up with a good colorist when you get older.” I was offended because I love her “stripe” but do realize that if the day comes that she hates it and wants to color it (many, many years from now!), I will honor her request. It will kill me but she’ll love it someday when she’s old enough to appreciate her unique differences.

haeli mae March 30, 2011 at 9:13 am

My husband has vitiligo. The majority of it is waist down and out of sight but he does have a small spot on his neck that he is worried about spreading onto his face eventually. What do you know about which sunscreens/spf levels are good for protecting sensitive areas such as vitiligo? He is a rancher and is outside about 99% of the day all year long.

I’m glad you posted this about Pumpkin’s condition. I would tell her that she indeed is unique and beautiful. I love my husband’s vitiligo! It is so funky! You could also tell Pumpkin that fair skin is actually seen as beautiful! Think of Marilyn Monroe, Nicole Kidman, Scarlett Johanson!

She is precious and I love her Fairy lashes!

Angie March 30, 2011 at 9:15 am

My husband and his grandmother have vitiligo and I think that they were fine with it – as long as they are reassured by family that it’s not a bad thing and that they’re still beautiful the way they are. Building confidence is important.

Kathy Elphick March 30, 2011 at 2:19 pm

If you’re worried about your decision not to use the cream, don’t be, my son has tried it and didn’t think it did anything at all for him.

Kimberly March 31, 2011 at 12:54 am

I have not much to day other than- BEAUTIFUL! so pretty, love her lashes and her cute freckles! (and you are a rockn’ mama for thinking about it all the way you do)

Amelia March 31, 2011 at 2:38 pm

My husband, 3 of his siblings and my mother in law have it. (3 of those have other autoimmune disorders and they are linked somehow.) They all developed it later in life, mid-20’s to 40’s.

Frankly, I think it is pretty. I’m not sure my husband believes me. In high school, i knew a girl with pigmentation issues as well and I always thought it looked pretty. (My husband doesn’t like that I call it pretty.) My husband has it on his hands, eyelashes and then random spots. Its been pretty much the same for all his family. I think it does bother him sometimes especially when it first started but overall he knows who he is and that spots aren’t what he’s all about. And he likes to reference Michael Jackson.

My mother in law has used some creams but nothing has worked very well for her. I guess its different for women since there is such a focus on our physical appearance. At least the 2 woman that have it in the family are much more concerned than the males.

Jason April 1, 2011 at 10:15 pm

I understand your concern about not making her feel like she needs to be fixed. At the same time, that strategy is clearly not working if she is bothered by her appearance. As a therapist, I worked with a 30-year-old who had the same condition but was not allowed to cover it up by her parents. As a result, she was teased constantly at school and carried a considerable amount of emotional trauma with her for decades. You cannot lose by both showing her that you accept and love her for the beautiful person that she is, and at the same time helping her feel good about herself in public by wearing mascara.

Leslie April 2, 2011 at 1:41 pm

I bet you could start a trend. The high contrast in her lashes absolutely looks like something I would have done when I was an I-want-to-be-different-from-everyone-else teenager. If you can colour lashes at a licensed salon as one of the commenters has already pointed out, I’ll bet you can de-colour them as well!

daneilia April 5, 2011 at 8:52 am

its awesome how brave your daughter is and pretty at that. but its crazy how the rest of us take for granted how “normal” “we think” we may be. tell your daughter to rock those lashes because no-one else has them 😉

Laura April 10, 2011 at 8:42 pm

Please tell your daughter she’s not alone. I was diagnosed with vitiligo at age 12. The entire right side of my face and neck has blotches of missing pigment. My right side rocks the white eyelashes, white eyebrow and streaks of white in my hair. I won’t sugar coat it, it wasn’t easy going through middle school/ high school, but makeup and hair dye became a lifesaver. Yes, my mother let me delve into makeup much earlier than most parents would, but it truly boosted my confidence 100%. In fact, I’ve gotten to be such a pro that by looking at me today you would never notice I have vitiligo.

It’s made me a stronger person and taught me humility. Even though it can be incredibly frustrating at times, I think it’s made me a better person. If your daughter has any questions for another gal that made it through school with white lashes, feel free to contact me. 🙂

Laurel April 15, 2011 at 3:52 pm

I also have vitiligo, so does my brother and so did my dad. I am always grateful for my fair skin which makes the condition much less apparent. Your daughter is not alone!

Emily April 18, 2011 at 9:05 pm

No experience, but I must say that I love her two-toned eyelashes. I think they are simply beautiful 🙂

Wendy April 20, 2011 at 3:34 pm

As mothers we always want to do the right thing for them. To help them remain confident or become confident. To help them feel beautiful in the face of physical adversity. We want to protect their fragile little egos and and help them embrace and love the differences they have. I struggle to find the right way to balance. Thank you for sharing this and replying to my tweet about my Molly and her tumor. It helps to know that I’m not the only one afraid of doing too much or not doing enough to make her feel as perfect as she is.

Jennifer Snyder April 25, 2011 at 6:35 pm

Wow. Pumpkin looks just like my little girl! My daughter developed vitiligo just before her sixth birthday last year. It’s on her face and neck, with the majority of it being between her eyes, coming down and around her left eye.

Since she is fair-skinned, most people don’t notice it. But, then her eyelashes started turning white. It was just a tiny bit in the corner of her eye. But, about six months after the vitiligo started, it spread about halfway across, just like Pumpkin, as well as into a bit of her eyebrow. (She also developed a few white patched in her hair.) This was in December, and we had just seen The Nutcracker. So, I told her white eyelashes reminded me of The Snow Queen. She loved that. But, inside, my heart was breaking. In fact, the whole vitiligo process has been just completely heartwrenching to me. For a fair-skinned person, it really is nothing in relation to the whole spectrum of diseases. But, I was and am, at times, filled with worry about her future self-confidence. I want her life to be a blank slate, and don’t want this disease or anything to mark her future. But, her life isn’t a blank slate. It’s God’s slate, and he’s writing her story. Which I know will be beautiful.

I totally get you wanting to make it clear to Pumpkin that she doesn’t need to be “fixed”. We are not opting for mascara or anything like that. People suggest it all the time, but we think that would send her the wrong message. We are treating her with topicals, and have seen *a lot* of progress in the skin, but not the eyelashes. The other day she actually asked me why I wanted her eyelashes to go back when that’s what made her so special. We talk about her skin condition so little because we don’t want to make it seem like a big deal, so I didn’t realize that she’s become very attached to those white eyelashes. It gave me pause. Maybe we should quit treating her? But, I don’t know if she’ll feel the same way in a year or two. Or if the white keeps spreading or if kids will continue to be pretty nice about it. So, I’m inclined to keep treating her.

I’m sorry to write so much. I know no one else IRL that is dealing with this, and it’s been a lonely, frustrating journey for my husband and me. If you ever need anyone to talk to about it, please feel free to contact me.

-Jennifer

Kristi Reply:

Hi Jennifer,
My name is kristi and my eleven year old daughter has vitiligo as well, we live in California. We have been treating our daughters vitiligo with an alternative approach, and we have seen amazing progress .
My husband and I are alone as we’ll in our fight against vitiligo. We don’t have a strong support system with family and keeping a positive spin on this condition for our daughters mental health is exhausting.
However I would like to offer you hope. It has been suggested by many homeopathic doctors that vitiligo is caused from “leaky gut syndrome”. Please google this. We have changed our daughters diet and have healed most of her vitiligo, she had about 30 spots , the ones on her ankles are the most stubborn but are going away little by little.
We also have added supplements to our daily routine. Our daughter takes 2400 ml of frolic acid, b complex sublingual 2x day, 1000 mg vitaminc, digestive enzymes, kelp, ashwaganda, and probiotics.
Don’t let western doctors tell you that your child is heathy because she is not, something has gone wrong internally that is why her ammune system is attacking her own body tissue. Please use common sense.
This disease has a cure, don’t be so foolish to let the doctors think it does not. You can also look up “Emily’s vitiligo”, this dad cured his daughter of the disease and she had it all over her body, Emily is now in her 20’a I believe and has not had a return of the condition.
Cure your child gut and you will cure her vitiligo. Please contact me if you have any more questions.
Ckcgk@yahoo.com

Archana Reply:

Hi Kristi,

My daughter was diagnoised with Vitiligo last year. I wanted to talk to you about wha kind of alternative treatments and diet you are following. I have sent you an email wit my phone number. Sounds like you had a great success with your daughters repigmentation.
Please do reply back to my email.
Sincerely,
Archana

Sofisan April 26, 2011 at 10:56 pm

Hi, just found your blog, it is lovely!
My mom has vitiligo and one of my aunts and my grandma had it, The only thing that really has worked for my mom ever was eating extra (I don’t know if this is the word in english) beta carotene, It is the stuff from carrots and it is very healthy any way so you could bump up the amounts of carrots served at the house, that would not be a “fix” but would still maybe help.

I must say though My mom has it on her face and I always used to assume it was the stand out feature of her looks and say to people “Oh, then you must have met my mom, she is the one with the white spots on her face.” and no one ever knew who I was talking about and then when they understood who I was talking about they always say “she has white spots on her face?” so it is not as noticeable as we think. And if she worries bout the lashes when she is older she can dye them as someone already said, it looks quite natural and she can go swimming and stuff, and then when she stops being bothered she can just let it grow out… I think she looks great!

Allison May 2, 2011 at 11:01 am

I am 25 years old and started to have vitiligo 2 years ago. I understand that it is not easy… I too have white lashes and somehow mascara just cannot hide all the whites lashes for me. I am planning to try tinting my eye lashes and will let you know how that goes. Vitiligo is not an easy problem to deal with, but I am sure family support and a good positive attitude with help Pumpkin through this.

Rin May 8, 2011 at 11:33 am

Hello!
I was just researching more about Vitiligo, and I came across a picture of your daughter. She makes this look GOOD. I only have it on my lower right leg (cow spots XD ) and it doesn’t bother me at all. I guess if I didn’t have more severe medical conditions going on, it might.

I don’t think I would necessarily keep her out of the sun. I live for the outdoors, and my funky tan just adds to my uniqueness. It is sometimes necessary to get really high SPF sunscreen, because of the high “skin cancer” risks. I only put it on my white spots 🙂 They aren’t a big deal. It’s just having a white, constantly growing birth mark. (I have a dark birthmark on my cheek, my mom used to tell me that’s where angels had kissed me.) But it’s no big deal. 🙂

Well, I hope you have a good day. If she wants to use mascara and cover it up, then that can be up to her. Sometimes I choose to wear long pants. But, I hope she can look in the mirror and find that her skin condition does not hinder, but helps make her the uniquely beautiful person she is.

cindy May 20, 2011 at 9:38 am

I came across your website again after saving a t-shirt tutorial in my email a year ago (such a long time!).

I have vitiligo. As a baby my eyelashes were white, then they fell out and grew back in black, then when I was about 12 I started getting patches of it on my face and it spread from my hairline down to my neck. Middle school was hard for me, but when I discovered makeup in high school it was a godsend (Dermablend for when your daughter gets older, seriously the stuff rocks). I’m naturally tan, so it is very noticeable. I went to a dermatologist and tried the creams and various lotions, but nothing worked, in fact it made my skin more sensitive to the sun. That was 10 years ago though, maybe they’ve improved since then.

Suncreen is a must! Sun seemes to aggravate the vitiligo spots because there is no pigment, the skin is easily burnt. My husband says he likes my face better without makeup on (one of the many reasons I married him!) and even though your daughter may have some bad days – children can be cruel sometimes – it sounds like you’re doing the right thing by confronting her fears. She truly is beautiful. And if she does start feeling self-consious at school, it won’t hurt to learn how to wear mascara correctly from her mama!

Kate September 12, 2011 at 5:04 pm

Hi, My daughter (6 years old) has a Vitiligo spot on her face very similar to your daughters. She also has mostly white eyelashes on one eye and with dark brown hair it is very noticeable. We have done some light therapy if you want to chat! I’m always interested to hear about other parents and what they are doing.

gonna April 17, 2012 at 10:19 am

I just saw mine im 15 now i got it on my face and hands now in face im planning to kill myself soon i cant deal with all the people looking at me wierd

Joanne August 1, 2012 at 8:23 pm

I just wanted to thank you….. I needed to read that tonight. My 10 year old daughter was just diagnosed and I am soaking it all in. My heart breaks for her and I am struggling with all of the same decisions you are. I really needed to hear what you wrote in your last sentence. It puts it ll into perspective
doesn’t it? God bless

This is Carrie
Twitter: thisiscarrie
Reply:

Good luck to you. It’s nice to know there are other people out there dealing with the same thing. We just noticed two new spots – both elbows on our little girl. We haven’t told her yet, hoping she won’t notice for a while. The summer is harder because as much as we lather her with sunscreen, she still gets tan (even as a redhead with freckles!), so her spots become even more noticeable.

Love to you and your daughter!

Gaspar October 9, 2012 at 7:30 pm

She looks beautiful.

Kandyce December 19, 2012 at 2:39 pm

I have twin daughters and only one has white markings from the bottom of her hair line down her neck, arm and on her chest. She has aksed me many times what they were and I told her they are special marks, and she seems to be fine with them. I also have shown her pictures of other people with the marks and she said they are pretty too! She is 7 and I have taken her to different doctors and no one can seem to give me an answer on what they are. They keep growing in size but I think I’m more worried about it the she is.

And her fairy lashes are amazingly bautiful!

Mhairi January 18, 2013 at 9:52 am

I think her fairy lashes are beautiful! She should never cover up her uniqueness with mascara although I understand it can be difficult to feel different as a child / teenager!

T.another fairy March 23, 2013 at 3:28 am

She is Gorgeous !! & I know that because I have experienced the same exact story.
I’m 21 now, and about almost 4 years ago I began to have patches on my right side of my face and half of my eyelashes turned white. That is, exactly the same as your daughter’s.
The experience of growing up as a teenager with such disorder have been devastating for me. Everyone asks and wonders, some even made fun of me. But off course most of these people were totally ignorant of the whole process of vitiligo.

I’ve been using make up and mascara for the last 3 years as a way to avoid everybody’s questions. But I would never recommend it as a daily basis solution, because now i can’t go out without make up and that personally makes me insecure.
The fact that you support her and reassure her that she looks absolutely gorgeous without make up will do wonders to her self-esteem and she’ll probably be confident enough to never care what others might think.

And YES fairy lashes are the best , it makes me feel different and unique.
It’s nice to know i wasn’t the only one 🙂

Best of luck for you and your precious daughter .

gen April 10, 2013 at 11:29 pm

Those lashes look amazingly cool. I hope she embraces them and doesn’t cover them up to make them “normal”! Although, just occurred to me actually, she would have the opportunity to use bright coloured mascaras and have them show up amazingly well on the lights part when she’s a teen… A cool streak of purple, or blue… Lucky girl.

sarahjohnson May 24, 2013 at 4:35 am

I too have the partial white eyelashes. Those were my first sign at age 29! It doesn’t bother me bc I’m pale and hate the sun anyway.
Did want to let you know, as an adult it probably won’t matter. I do not wear makeup on a regular basis. I get comments galore on my eyelashes. They notice them before the other white around my eyes. Women love the look. They ask how I did it. Lol. At first I just said oh, its vitiligo ya know that thing Michael Jackson had. They suddenly are horrified with embarrassment. Since its not bothersome to my self esteem, I feel bad for THEM. I just started saying “its natural, but cool right? I wish I could get the rest to turn white!”
She will find men, later on of course, are either intrigued & find it sexy or don’t even pay attention to it.

I’m sure as a kid, its rough. I hope it doesn’t get to her now bc for a lot of adults its not as big of a deal.

My legs don’t tan, only burn and go back to bright white. The derm didn’t use the light on my legs bc I’ve never mentioned it. I went for a mole check & he started looking at me strange then asked about my lashes. I had asked 2 regular docs that didn’t know, so I let it go and thought maybe stress.

Leah Reply:

Hi Sarah,
I was diagnosed at 29 with vitiligo as well! I am not handling it as well as you! I really like your positive outlook and was hoping you could let me know how you deal with this so well! Have you tried anything to stop the progression? You said you are pale skinned as am I but it still feels like a beacon is flashing at me! Ugh! It is a lonely place to be and would love to chat more if you are willing.

Lisa June 27, 2013 at 1:19 am

Hi, I only just stumbled across your article. Like pumpkin on one side of my face I have blonde eyelashes and eyebrow and the other side of my face is brown lashes and brown eyebrow. Mine was first noticed when I was 3 months old. Going to school was embarrassing for me as I had to older sisters and they felt the need to point out to people that I have different coloured lashes. I also have a large strip of blonde hair down one side of my head. I have always squinted on the side of my face with the light lashes and my ophthalmologist tells me that those with vitiligo are usually photosensitive( sensitive to bright lights and sunshine). I have had very close friends who were too afraid to ask me why my lashes and eyebrow were different colours, assuming that it was due to some sort of trauma. Although an adult know, I have noticed that these days most kids/ teenagers have remarked that they think it is cool. I was always very self conscious of it, taunted at times including boys asking me if my pubic hair was half black and half white and my little sister calling me top deck after the white and dark chocolate. I have found that the best thing has been eyelash and eyebrow tinting and eventually realising that it is no big deal and that those who are close to you will still love you and hardly notice it. The teenage years were the hardest though so I do feel for pumpkin. These days I am even able to joke about it, I cover up my white eyelashes and eyebrow so that only the dark coloured side can be see and then say to people ” welcome to the dark side”. Once they see that you aren’t bothered by it, they usually aren’t either. If it does bother you 2 much though I would say use mascara or get eyelash tints, they certainly made me feel better esp when at occasions like weddings and birthdays where photos would be taken. Pumpkin don’t forget that you are beautiful, so let your beauty shine through

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