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Literature

Moving New Book Sheds Light on Vitiligo

January 22, 2023

Greek-American Stella Pavlides, Founder and President of the American Vitiligo Research Foundation (AVRF) shared the new book Brown Girl Turning White by Kaleah, a woman with vitiligo, a condition in which the skin loses melanin, resulting in slowly growing white patches of irregular shapes appearing on the skin, as noted on the AVRF website. The white patches gradually become larger over time, are particularly sensitive to sunlight, and can cause stress and anxiety for those who have vitiligo. There is no cure for the condition.

Brown Girl Turning White, subtitled How I Lost, Then Found My Identity with Vitiligo, is a a particularly moving book as Kaleah recounts her childhood and how her life changed following her diagnosis. From being teased at school and hearing upsetting comments about her appearance to finding supportive allies along the way, including Pavlides and AVRF, Kaleah teaches valuable lessons by sharing her story that is so inspiring, and not just for those who also have vitiligo, but for anyone who has ever felt like an outsider.

Though the book is short, it offers a great deal of information about vitiligo and the ways it affects the lives of those diagnosed with it and also affects their families and friends. Photos highlight Kaleah’s journey while also showing readers how her skin changed through the years. In this way, the book raises awareness of vitiligo and hopefully, increased attention will bring donors to fund further research and find a cure.

Pavlides said, “I hope you enjoy what Kaleah has written. I personally believe that it is one of the best books I have read regarding vitiligo. Kaleah did an excellent job sharing some of her life experiences with this life-altering skin disorder.”

Edited by Massachusetts General Hospital Clinical Instructor in Dermatology Dr. Nicholas Theodosakis and Dr. Katie A. O’Connell, the book also includes a letter from Dr. David E. Fisher, Head of the Department of Dermatology at Massachusetts General Hospital, Harvard Medical School, who noted that the depigmentation caused by vitiligo can have “devastating psychosocial consequences.” He also mentioned the need for further research on some “key recent discoveries” that could help patients living with the condition, if funding for the research could be secured.

Pavlides, in a previous interview with The National Herald, had shared her own story of living with vitiligo and eventually founding AVRF in 1995, a federally tax exempt 501(c)(3) charity based in Clearwater, FL. The daughter of Greek immigrants, Pavlides was born in Manhattan and grew up in Astoria where she attended St. Demetrios School. She married, had her son, and then a year later she was diagnosed with vitiligo. She had struggled to accept her diagnosis at first but through the years, she managed to cope and also reach out to help others through AVRF.

The book is available online through the AVRF website where more information can be found about vitiligo https://www.avrf.org.

According to the website, AVRF’s mission is to provide “public awareness about vitiligo through dedicated work, education and counseling. We seek to make a difference worldwide to those afflicted by the disease, focusing on children and their families. We embrace diversity and encourage acceptance. The AVRF encourages higher ethical standards in research, and therefore supports finding a cure through alternatives to animal testing.”

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