IT'S CALLED VITILIGO
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@itscalledvitiligocampaign 

Meet Leah F.

10/20/2018

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I first heard from Leah in 2015 when she reached out to me via Facebook after reading my Buzzfeed article and that was that. She complimented my tattoo and told me it gave her hope knowing she was not alone. Leah’s comment about not feeling alone really stuck with me as I too had felt alone for so many years. It took me three years to ask Leah if she would share her story with me. Why I didn’t ask for it right away when I knew exactly how she was feeling I’ll never know. Not only did she agree to share her story with me but she agreed to share it with the world. After sending her the campaign questions, she got back to me with hesitation. Leah realized she has never fully dealt with her feelings revolving around her Vitiligo.

At around the age of six or seven years old, Leah noticed her first couple of spots behind her knees and elbows. She didn’t know what to think. She has been told her great grandfather had Vitiligo but it was never confirmed. Her family took her to a specialist who was fairly convinced that her white spots wouldn’t spread. Early on, Leah’s specialist made it clear that her Vitiligo was a “cosmetic issue”. “The specialist we saw in St. Louis was in the top five of the nation for Vitiligo treatment but had the worst bedside manner. They informed me I was too young for any of the treatments they offered.” By the age of ten, Leah’s white spots covered about 80% of her body.

Leah has always felt her family was as
 supportive as they could be. As a child, she adapted to applying sunblock every half hour. She remained in the shade as much as possible and wore long sleeves and pants even when it was hot outside. Without her or her family recognizing it, they enabled her to hide or cover her white spots rather than to let her feel empowered in her own skin. Leah continued to seek treatment and medical guidance over the years. She quickly became discouraged as nothing had changed in terms of treatment for Vitiligo patients. “It became grueling and frankly it felt helpless finding a treatment or cure. I opted for the bleaching method as I was so covered anyway, BUT insurance refused to pay for it.”

​Leah was bullied all the time when she was younger. She was bullied so much that she  refused to dress out for gym and almost failed it in 3rd grade. “I’ve been called everything from leper, dalmatian, burn victim, etc.” Thankfully, over the years the bullying somewhat subsided as she outgrew her classmates in height. “ It was very harsh getting Vitiligo as a kid, words hurt. I did/ do have some wonderful friends and family that were very supportive, but unfortunately my bad experiences outweighed the good.”


I asked Leah if she now embraces her Vitiligo and she responded, “I thought I had but after having to answer in depth questions about it, apparently I’m not. I’ve found coping mechanisms but have never embraced my spots truly.” She covers her spots all the time in the summer. She’s found a few products that even out her skin so she feels more comfortable exposing her legs and arms. “I constantly wear sunblock to prevent the skin with melatonin from getting tan/darker and draw more attention to it. I stay out of the sun if possible, partake in spray tans which have left me orange more than a few times before finding the right product.” When she stops and thinks about it, she feels that she spends too much time concealing her Vitiligo in the summer .

In public, Leah has seen a lot of people who have Vitiligo. “When you have it or know what it is, you can spot it a mile away. It’s normally met with, “Hey, you have vitiligo” and a melancholy response of “yep, you too, eh?” and we move on, almost as if we’ve had similar experiences and don’t care to go into detail.” Over the years the most genuine questions I’ve heard have come from children. This is very appreciated because they innocently wanted to know more. Frequently a nervous parent would interrupt and apologize for their child's rudeness. I would ask to let me answer and encourage their child to ask questions. Far too often parents teach children to not engage with those who have disabilities or a visible ailments which breeds ignorance. I’d much rather they ask, nicely of course.”
Now at the age of twenty-eight, Leah feels she is still not in a place where she can wear her white spots proudly. “The confidence level has never been there. I work in sales and have found I don’t have the confidence to own it and still rock at my job.”
However, we all know Leah rocks, spots and all.
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​However, we all know Leah rocks, spots and all.
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author Tiffany Grant 
@itscalledvitiligo.grant 

I have been living with Vitiligo for 21 years. My first spots appeared on my knees at the age of 7. I decided to get the tattoo "It's called Vitiligo" a few years back to put a name to the disease and help educate others. Many sources, including Women's Health Magazine and the Daily Mail,  shared my story around the world, spreading awareness and breaking down the stigma of living with Vitiligo. From Brooklyn, NY, I continue to advocate and raises awareness for Vitiligo.

1 Comment
net worth link
9/8/2021 12:11:10 am

Thank you for sharing the nice article.

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