Every parent and patient living with vitiligo has their own journey. From the moment you first hear the word ‘vitiligo,’ to getting a diagnosis and figuring out how to react, we each navigate through different obstacles and emotions.
Looking back, I see my own journey in four distinct emotional stages. And today, I write to share those experiences in hopes that my words can help another to know they are not alone.
Stage 1: Figuring It Out
In the summer of 2012, I noticed a white speck on my three-year-old daughter’s neck. Of course it caught me off guard, but it was summer and she had some cute little rolls so I figured her skin didn’t tan between the folds. Months passed with minimal progression, until we made a big family move to China.
While abroad, new spots appeared on her neck and torso. Like any worried parent, I frantically turned to WebMD obsessive googling, taking the situation into my own hands. Finally determined to seek a true medical opinion, we found a “western” doctor in China. The verdict was swift and short: “Yes, your daughter has vitiligo. I’m sorry, but there is no cure.”
Stage 2: Forgetting About It
Thanks doc! Such a beacon of hope for a young mother heartbroken at the article headlines I had read regarding vitiligo: “Most people who have Vitiligo struggle with depression” and “Many kids with vitiligo are bullied and ostracized…”
I didn’t want to think about all the “what if’s.” I didn’t want to believe that it would get worse. So I went on with life trying to forget she had vitiligo. Don’t talk about it, don’t think about it and maybe it’ll just go away. Each time I found a new spot, my heart would drop and I’d tell my husband, “If her vitiligo would just stop spreading, we can deal with what she has.” The vitiligo didn’t stop.
Stage 3: Fighting It
After two years in China, we moved back to the United States and began working a doctor specializing in functional medicine. Here’s where I have to preface this conversation: I am aware that not everyone feels its right to “fight” or “fix” vitiligo. However, I know I couldn’t live with myself if I didn’t try. As an eight-year-old, my daughter seemed fine, but I couldn’t help but think about what would happen when she turned into a self-conscious preteen and I wanted to do something.
We started with tests as I focused on more research about vitiligo treatments. Food tolerance, toxin marker and GI stress indicator testing came back to show that my daughter lacked certain vitamins and minerals and also had unbalanced bacteria in her gut. I also had the chance to go to World Vitiligo Day 2017 and speak with some of the top dermatologists specializing in vitiligo, who said that UVB light therapy three times a week could help in our case. Diving into treatments and gut and vitamin restoration, we’ve seen repigmentation starting in many spots.
Stage 4: Flourishing With It – And How We Live with Vitiligo Today
As a mom who chose to fight vitiligo, I have also tried to be aware of the message it might send to my daughter. I make it known that she is beautiful the way she is and if treatments don’t change her skin, it’s going to be okay. But, since we have the capability to try, we will try. This mantra stands true for most things in our life and this one is no different. She is confident and happy and flourishes every day in the skin she is in.
For the first time in a long time I have been able to relax, even if it’s just a little, knowing that we are seeing improvement and that the vitiligo is not continuing to spread. My hope is that no matter the final outcome regarding my daughter’s vitiligo, she continues to build on the strength and perseverance she has gained through living with this autoimmune disease. And I hope she knows that I will always be standing next to her as we both continue this journey.
Julie Hartley is a proud mom to Leah who has vitiligo. Leah loves animals, art and playing with friends. Julie lives in Northern Kentucky with her husband Chad, son Chase and Leah.