
One family’s story: How vitiligo is an ongoing journey of discovery
This may be a first for The Vitiligo Society as we share not only Sophia’s personal vitiligo journey, but also the reflections of her parents, Izzy and Neil. This blog highlights how vitiligo can affect the whole family in very different ways, and shines a light on the importance of communicating openly and honestly through everyone’s vitiligo journey.
Izzy & Neil’s Story:
“We were blessed to have our baby girl Sophia back in 2011 when all odds were against us, and life has been wonderful ever since. Through the highs and the lows, we as a family have always pulled together and faced things head on.
Sophia first discovered a unique mosaic pattern on one of her ankles when she turned seven. We were informed it was a chlorine infection from swimming and that, by applying cream, it would gradually disappear. Sadly, this was not the case, and we took it upon ourselves to see a private specialist to get a diagnosis.
Like so many, we had no idea what vitiligo was. Our initial reaction was to immediately research it on Google, and the results left us in a complete state of shock! While this was happening, we very carefully kept our emotions strictly hidden from Sophia to protect her. I remember sharing the news with her primary school and breaking down in front of her form teacher who was nearly half my age. Neil and I were a wreck.
As time went on, we thankfully worked through these feelings and started to think about the future and what was best for Sophia.

Moving into the NHS system, we tried a selection of topic creams, but they did not seem to make any difference. In fact, some of them even burned her skin. Generally, our interactions with doctors have been very poor. Every appointment was with a dermatologist, but never a specialist in vitiligo.
But last week in Walsall, we went straight to the children’s ward and a doctor sat with us for one hour (as she knew that we had travelled far). We gained more knowledge and guidance in that one session compared to all our previous appointments over the years. They made Sophia feel so comfortable and rewarded her with a chocolate bar!
We were highly impressed with our overall experience there. It was well worth the journey, and we went home with a positive plan of action for Sophia’s treatment. While these recent developments have been promising, we’ve often felt lost and alone as Sophia’s vitiligo continued to spread. It was during one of these low moments that we decided to contact The Vitiligo Society.
Now a member for a few years, we feel happier and reassured knowing there are many people out there who have the same condition, including young children. We have felt encouraged and supported and have attended a few meetings online. But I think our biggest praise goes to Abbie Hurrell who I regularly speak to and who has guided us through our vitiligo journey.

Sophia has been on the waiting list for light therapy for some time, due to a backlog created by the pandemic. When we finally got offered this treatment in September last year, Sophia decided to not go through with it at the last minute. She said: “As a teenager now, I feel that the emotional stress from the possible side effects could potentially damage my wellbeing (especially as I start my GCSE journey) as well as undo all the hard work I have done to build up my self-confidence over these last six years. Besides, I love who I am and feel incredibly comfortable in my own skin. Therefore, why would I want to change this?”
This still left Sophia with the question of how she can disguise vitiligo patches that are now appearing on her face and turning her eye lashes white. Abbie stepped in once again and recommended some wonderful skin camouflage make up specifically for young people. Her school have been incredibly supportive and allow her to wear subtle black mascara and foundation if needed!
I must admit that Sophia continues to surprise both of us daily. We are such proud parents to see her growing and blossoming into a remarkable young lady and becoming a fantastic role model for other young people who might be struggling with vitiligo. As her parents, we will support her every step of the way!
This leads me onto telling you about our end-of-year fundraiser. As an opera singer, recording artist and vocal tutor, I organise Christmas concerts with my students to raise funds for charity. It is the perfect way to end the year and a lovely way to kick off the festivities!

For the first time this year, we decided to raise money for The Vitiligo Society on Sophia’s request. She was ready to lead the way and bravely share who she is and what vitiligo means to her. Sophia wrote a song especially for the concert called ‘Possibilities’. She performed the song to inspire other young people to embrace their individuality and be comfortable in their own skin. The event was a huge success, and we managed to raise £1000 for the Vitiligo Society! We have decided to do this as a family every year from now on.”
Sophia’s Story:
“When my vitiligo started to show up, I was so young that I didn’t really understand or care about it that much. I went to an infant school, which I think was such a brilliant thing to do, and no one ever mentioned it there. But when I joined my primary school in year three, everyone knew each other, and I felt like an outsider. I did know a few people from nursery, but I hadn’t seen them for a few years, so they still felt like strangers. At the beginning, everyone questioned me about the “weird” white patches crawling up my legs. Some people even thought it was contagious and wouldn’t come near me for the first week or so.
I did have one extremely close friend called Emily, and she would always be there and stand up for me if anyone said anything hurtful.
As I grew older, my parents helped me structure a good response to any questions I might get asked about my white patches. Now it feels easy to discuss my vitiligo, and I don’t feel uncomfortable when asked about it.

Then I started secondary school, which was an entirely different world, and I’ve been there for three years now. My school is well known for its understanding of disability and different conditions, so I’ve only ever had two people ask me questions about my vitiligo!
Recently, it spread to my face, which I found quite hard because I looked in the mirror and saw someone completely different to who I usually saw. But my mum helped me find this special foundation, which The Vitiligo Society suggested, so I can now choose whether or not to cover up my patches. All my eyelashes on my right eye have turned white too. When that first started happening, I found it very hard, but again, I can now cover it up with mascara if I choose.

Recently, my family and I held a fundraising concert for the Vitiligo Society, which was excellent! I got to perform one of my own original songs called ‘Possibilities’, which I wrote to inspire other kids not to let anything – or anyone – put them down! My advice for other teens or kids living with vitiligo is to never be ashamed about how you look. If you are confident, then you won’t care when people ask questions or say things. At the end of the day, underneath our skin, we’re all the same!”
The Vitiligo Society would like to thank Izzy, Neil and Sophia for sharing their stories and for their incredible efforts in raising awareness of vitiligo, and fundraising to support our work.

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