The 4 Emotional Stages of Vitiligo: A Mother’s Perspective
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.
Hi Julie, thank you for sharing your experience, I can relate to a lot of what you have shared. I find it a tough balance between wanting to heal the condition and supporting the acceptance. I talk to my 13-year-old daughter, who has just been diagnosed, that the purpose of any treatment will be to support her health, rather than share my anxiety about her being teased by others or indeed my own sadness of my daughter changing before me. I have been fighting my own sentimentality about my loss of my daughter’s olive skin and very dark hair and eyes, which seem so part of who she is, yet I know her skin in no way defines who she is. When she got diagnosed the consultant said to her that people will likely get out the pool when she gets in, but don’t worry its because they are likely thinking its contagious. I was a little taken back by this as my daughter already has times of anxiety and I just felt this was too much fear being put on her. Since then I am always weary of how much information to share with her, being between an adult and a child,I have decided that she will need to make the final decision on any treatment, I will only suggest treatments and inform her on what I feel is helpful as when she asks. She has patches on her knees and elbows and to date she always tells people who ask that they are her scars (as that’s what we thought they were) and has never shown any interest in covering them up. Now we have the diagnosis, it is sad to see that she is more self conscious about the patches, in addition she has small white patches starting on eyelids and ankles. I am thinking about trying UVB treatment mainly to help reduce the inflammatory immune response and prevent spread, as well as test for deficiencies and was interested why you said UVB in your case would work, are you aware of cases of vitiligo where UVB would’t be worth trying? Thanks for sharing and very best wishes to you and your family x
I totally understand where you are coming from and trying the figure out what the right decision is moving forward. From what I have learned regarding UVB the more recent the spotsthe easier to repigment. Face is typically easiest while ankles and hands are the most difficult. When we started treatment on leah she had spots on her neck, torso (large ones), knees, ankles, hands and starting behind the knees. Currently the only place we don’t see repigment happening is her ankles. My daughter also tans easily with olive skin and brown eyes which does make the spots stand out a bit more especially during summer.
Her torso is almost 100% repigmented as well as her knees. We just recently worked with the manufacturer to get a stand up in house unit so we can do the treatments at home. We did about three months at the doctors office and with such great improvement insurance approved an in house unit. It’s a few mins each time, three days a week.
Please feel free to email me directly and I can send you any information you may want/need. I’d be happy to share pictures of Leah’s progress as well. I searched and searched before starting UVB with my daughter and had a hard time finding a real case online with pictures and information which made it more difficult to make the decision to move forward.
If you send an email through The living dappleled website, Erika can get us connected.
Hi, how did you find out about food tolerance and lacking in vitamins in your daughter, I really want to try that.
Also , which ointments did you use and how did you get your own UVB therapy light at home. Thankyou.
We used a Functional Medicine Doctor to test for food intolerances and gut health. The company I used to acquire the in home light booth is National Bioligical. If you want to send an email directly the Erika under “contact us” on the Living Dappled home page, she can give you my personal email address. I’d be happy to give you more details or answer any questions that way.
Thanks for your feedback and questions
Hope to hear from you soon
My name is Ivaylo, father of 5 year old boy with vitiligo…
Healthy and happy kid!
The vitiligo started around the eyes, mouth etc (you know the story)… it is almost a year already…
He has some on his back, chest, legs, hands, knees…
We had success with the tacrolimus and his face is almost clear now…
We just started the NB-UVB treatment and we are hoping that this will help (more general).
We started 2 months ago and in few places, we see small dark dots inside the vitiligo patches,
Also, some vitiligo patches appear more disturbed on the edges (seems like is working on the edges as well)
Once in a while, we see new spots but they were probably already there and when we started the light therapy they were more visible (because of the contrast).
How long it takes for the light therapy to start working (we have the home unit),
What else can we do?
Can you share some photos (before and after) with us?
Does it help on the legs, knees…?
What did you do to stop it from spreading?
I actually stopped taking vitamins and supplements daily and switched to CBD oil. Its pretty effective! 2 months in.. This is what I have been using https://cbdfx.com/products/cbd-wax/ I use it like a vape. It tastes good too!!