IT'S CALLED VITILIGO
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Meet J.J. W.

9/12/2018

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J.J. is the first person I’ve met who has lived with Vitiligo since infancy. His mother noticed light patches on his skin when he was an infant, however his spots were unstable. They would come and go. J.J. didn’t notice the spots himself until he was five years old. By 13 or 14 he noticed a spot on his face when he started shaving. It wasn’t until he was in his 30’s that his spots spread to larger areas of his body. Around 35 years of age the spots really began to spread on his forearms and face. “My forearms and face make me very self conscious at times, especially in the summer where my other skin tans.” His mother told him the doctor said they were light spots and nothing to worry about.

J.J., now 40, is living with white spots on his arms and face. He didn’t think anything of it until he did some research and finally put a name to the spots. J.J. was living in a state of denial until he decided to finally accept his Vitiligo this past summer. “I no longer let Vitiligo have control over how I live my life. Acceptance has been a huge relief.”

J.J. never sought treatment or medical guidance. Even though he would like to see a cure for Vitiligo, at this point in his life he doesn’t find treating Vitiligo to be a priority in his life. Thankfully, J.J. has such a supportive family and his kids think his Vitiligo is cool!

Even though J.J. has never experienced bullying, he has been questioned and stared at often. “I hate when people stare and  don’t ask me about it.” To avoid the stares, J.J used to cover his arms to the best of his ability and the only way he was able to cover the spots on his face was by growing a beard. Today he doesn’t necessarily embrace his Vitiligo but he doesn’t try to hide it either. “Embrace is a little strong, but my spots are growing on me...pun intended! I believe there is a reason I have Vitiligo and that is to help/encourage others who struggle with Vitiligo.”

“As a child, I didn’t really think about it; not many spots where people could see. As an adult, a little scary, a lot of uncertainties.” Even though J.J. had Vitiligo as a kid, his spots were not in noticeable places. He did not have to deal with anybody asking questions.  When I asked J.J. what advice he has for our youth living with Vitiligo he said, “Don’t be ashamed, hold your head up high, don’t pay attention to mean things people say, and you are special.”

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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
https://www.russhessay.org/coursework.html link
8/9/2019 06:36:26 am

The campaigns towards rare diseases are virtually impossible to fund. I mean, even the biggest of diseases do not get the support of the community, so how will we campaign for a lesser known one? I am not being negative here, I am just speaking the truth. There are volumes of information that proves what I am saying right now. I really do hope that I am mistaken though, I really am. This is a serious case and the government needs to support this.

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