As part of a campaign to build awareness around vitiligo, we are running a series of posts highlighting different experiences people have encountered whilst living with the condition. To hear real-life stories from people with vitiligo, follow us on our Facebook and Instagram channels.
There are over 45 million people worldwide that have been diagnosed with vitiligo. The condition has different and unique influences on each individual’s lives and their families– no two stories are the same. Vitiligo can affect anyone, including children and young adults. 14-year-old Dhyana shares her experience with us:
“My name is Dhyana Abeysinghe, and I am a fourteen-year-old girl living in New Jersey, USA. I have vitiligo, which is an autoimmune disease where my immune system attacks the cells that produce melanin. As a result, I have white patches on my skin throughout my body. I was first diagnosed with this condition when I was five years old.
“I have faced many challenges living with this condition in a society that is focused on physical appearance.”
“As a young girl with brown skin, this has been particularly difficult to cope with, and I have faced many challenges living with this condition in a society that is focused on physical appearance. These include uncomfortable stares, finger-pointing, people refusing to touch my skin for fear that it is contagious and hurtful name-calling.
“Vitiligo affects 1% of the general population. It could be hereditary or spontaneous and affects all races, ages, and genders. I am just one of the many kids and adults struggling to keep up on physical appearances with this condition. I have tried many treatments that were uncomfortable, unpleasant and painful with no success. I have now decided that rather than just trying to treat my vitiligo, I am going to accept it as part of me and be proud.
“We want to live in a world where everyone is treated equally, no matter how they look, and this is the first step to a new beginning.”
“I have decided to focus my efforts on raising awareness by writing about it and have launched a campaign and website for children (www.vitiligokids.org). I believe that the more educated people are about this condition, they will understand and be more accepting of others that look a little different from the outside. Our mission is to help bring awareness about vitiligo and make sure we can educate as many people as possible. We want to create a support group for children with vitiligo where they can share their stories, explore different treatment options, and make new friends who understand the struggles they go through every day. We want to live in a world where everyone is treated equally, no matter how they look, and this is the first step to a new beginning”.
Thank you Dhyana for sharing your story. More information on her vitiligo association can be found here.
VITILIGO COMMUNIQUÉ I: A scientific understanding of vitiligo.
VITILIGO COMMUNIQUÉ II: The role of narrowband UVB (NB-UVB) as the standard of care for vitiligo.
CLINUVEL’s YouTube Channel, The Photoprotection Network, has a dedicated series of education videos on vitiligo. To visit the series, click here.