15 Resources for Those Coping With a New Vitiligo Diagnosis
My son and I were both diagnosed with vitiligo this spring. Going through the diagnosis – and subsequent google search – was overwhelming to say the least. There is a lot of information on the web about vitiligo, and also a lot of misinformation. As we got to know the dermatologists, advocates and community leaders in the vitiligo community this past summer, I was slowly able to find resources that could help us as we learned about our “new normal.”
Research, treatments, do’s and don’ts – these are all questions I had when we were first diagnosed with vitiligo. And yet, getting your hands on the right information – and from the right specialists – proved difficult. Here are the resources I found most helpful.
A No-Nonsense Guide to Vitiligo by Yan Valle, a vitiligo patient and CEO of the Vitiligo Research Foundation
Feeling overwhelmed by treatment decisions? Wondering how to make sense of the holistic options marketed to vitiligo patients? This quick and easy read provided so much useful information to navigate the many decisions we have made this spring, particularly regarding treatment options and health and environmental factors. You can buy the book here.
University of Massachusetts Medical School Blog
Physician and scientist, Dr. John Harris and the Vitiligo Clinic and Research Center at the University of Massachusetts Medical School are leaders in the research of treatments and ultimately a cure for vitiligo. You can read updates from Dr. Harris and the research team on their blog at https://www.umassmed.edu/vitiligo/blog/.
“A Practical Approach to the Diagnosis and Treatment of Vitiligo in Children” by Khaled Ezzedine and Nanette Silverberg
For those of us raising children with vitiligo, this article, made available by the American Academy of Pediatrics provides a very good medical overview of vitiligo in children.
The Global Vitiligo Foundation
The GVF website provides a list of vitiligo treatment and research centers around the world. If you’re looking for a knowledgeable dermatologist, this may be a good starting point. It also includes information on advocacy and patient support.
Although vitiligo is not life threatening, it can be life-altering to watch your appearance change and to live with the stares and questions from others. For some, this proves to be psychologically challenging. I personally found it helpful to read a few of the psychological studies of those living with vitiligo to normalize the fears and concerns I have, both as a patient and as a mother, and to know that I am not alone.
“Hidden Victims of Childhood Vitiligo: Impact on Parents’ Mental Health and Quality of Life” by Abdulrahman A. A. Amer, Uwesu O. Mchepange, Xing-Hua Gao, Yuxiao Hong, Ruiqun Qi, Yan Wu, Yunfei Cai, Jinlong Zhai, and Hong-Duo Chen
This study conducted in China concluded the following: “Parents are the most sensitive and the closest caregivers for their children. The results of this study of parents with children with vitiligo indicate that they experience psychological problems or social pressure due to their children’s disease. Psychiatric intervention is recommended for parents with children with vitiligo.” Read the article here.
“Vitiligo: Patient stories, self-esteem, and the psychological burden of disease” by P.E. Grimes, MD, M.M. Miller, BS
The International Journal of Women’s Dermatology published this article summarizing the quality of life impact of living with vitiligo. Read the article here.
As the parent of a child with vitiligo, it can be hard to know how to do “what’s best” when it comes to vitiligo. There’s no right or wrong way to handle it – and yet the pressure to do “the right thing” can be overwhelming. These resources are designed specifically for parents looking for support on raising children with vitiligo.
Back to School Handbook by Living Dappled
The Back-to-School Handbook, created by Erika Page and Julie Hartley, offers a number of helpful resources and interviews for parents raising kids with vitiligo. Geared towards resources to support parents at the start of the school year, the handbook includes downloadable notes, confidence-inspiring t-shirts and information on journaling and how to talk to teachers about vitiligo. Find the handbook here.
Vitiligo Pen Pal Patch
April Sawyer, a fellow mother in the vitiligo community, was inspired to start the Pen Pal Patch when her daughter was diagnosed with vitiligo. If you have a child with vitiligo who would like to participate, you can find more information here.
Just for Parents by Lori Mitchell
Lori Mitchell was inspired by her daughter April’s experience with vitiligo to create a children’s book Just Like Me that can be used to teach children about the diversity in our world’s humanity, including vitiligo. She wrote an article for Vitiligo Support International that was a very helpful overview of her experiences parenting a child with vitiligo. Check it out here.
Harvard University Study on Resilience in Children
A few weeks after my son’s official vitiligo diagnosis, I had this thought: “Many people face terrible things in life, and go on to live inspiring lives. What strength do they have to be that way? Resilience. How do I raise a child with resilience?” Thankfully, I am not the first parent to ask this question. Harvard University has been studying resilience in children for many years and has published their findings. Want to know more about raising your child with vitiligo to be resilient? Check it out here.
When my son was first diagnosed, I felt like I couldn’t breathe. Although reading medical information and psychological studies was informative, I just could not imagine our new normal. I realized very quickly that I wanted to read the stories from patients of their experiences of living with vitiligo, and I wanted to connect to the vitiligo community. The following are a few of the websites, social media accounts, and in-person support groups that I have found helpful.
If you’re here, you are in the right place. Living Dappled is creating a very supportive social media community surrounding vitiligo. Earlier this year, Living Dappled published a list of vitiligo leaders and hashtags on social media. Feeling alone? Needing inspiration? Check it out!
For days leading up to and following my son’s diagnosis, I could not sleep. I could not eat. My hair started falling out from the anxiety. Then I found Keith Evan’s blog. Although he does not post often any more, reading his personal experiences with vitiligo and seeing the stories of his life as a photographer, for the first time I exhaled and knew we could do this. Life with vitiligo will go on, and great beauty can come from it. Keith, thank you for putting your story out there.
This website featuring the personal stories of several inspiring individuals in the vitiligo community around the world, is currently down for maintenance and a makeover, but in the meantime, you can follow founders Robert Hinkle and Lucian Voy on instagram at @rhinkle787 and @lucianvoy. The life stories gave me encouragement and vision for my son’s future, and the term “vitiligans” helped me see our community as a “vitiligo nation”. After all, if we all lived in a nation together, we’d be twice the size of Canada’s population! For me, this vivid imagery was incredibly healing for the overwhelming sense of loneliness I felt in diagnosis, and gave both my son and me a sense of purpose as ambassadors for our community.
The Global Vitiligo Foundation
GVF provides a roundup of support groups in the U.S. and in the international community, including chapters from a couple of the bigger organizations like VitFriends, V Strong, and the Vitiligo Society. If you are looking to start or join a local chapter, this is a great starting place to find helpful contact information. If you lead a support group, let GVF know so they can add you to their directory.
World Vitiligo Day Conference
Last June, the World Vitiligo Day Conference focused on the topic of raising children with vitiligo. I signed up to attend, because as the mother of a newly diagnosed patient, I had many questions. Little did I know, I would also be diagnosed with vitiligo four days before the conference began. As a new patient, I rode in a conference shuttle with a group of women who shared stories of the vitiligo support groups they lead around the U.S. and the advocacy work they do in Washington on behalf of our community. Vitiligo may be a life altering diagnosis, but that was a life-changing experience. I knew that though I have vitiligo, vitiligo does not have me. Like these other women, I will make good from my diagnosis. If you feel alone, please join us at the 2019 World Vitiligo Day Conference.
What resources have you found useful? Share them below.
Sara is vitiligo mom and patient providing support, community and awareness for vitiligo in Phoenix, Arizona. Her and her son, Titus, were diagnosed in the spring of 2018. Find her on Instagram at @vitiligofamily.
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