Vitlife

CELEBRATING THE MUMS OF CHILDREN WITH VITILIGO

Share this article →
 
 
Close

Search articles

Celebrating the Mums of Children With Vitiligo

 Posted on 10th March 2024  5 minute read

Today is a day for celebrating the special women in our lives – our Mums and Mother figures.

At the Society, we’ve spoken to many Mums of children with vitiligo and have come to realise just how concerned they are when their child is first diagnosis. Not knowing how they might be treated at school and questioning whether they are going to be stared at and judged because of their skin, are just some of the concerns some parents have found themselves having.

Often, there is a big focus on trying to instil them with confidence as a way of preparing them for later life when they might be faced with challenges. Reminding them that their skin is beautiful and unique, showing them toys and books where those with vitiligo are represented and attending events so that they can meet other kids that look like them so that they feel a sense of ‘togetherness’, are just some of the ways this can be done. Nevertheless, it cannot be underestimated just how important a mother’s love and support is to a child, especially in the early part of diagnosis.  

In this feature, we spoke to 3 amazing Mums of children with vitiligo to understand how their child’s diagnosis made them feel and how they continue to support their children with vitiligo.

Nikki

My beautiful boy Sami was diagnosed with vitiligo at 2 years old. His first patch came when he fell over which resulted in a scab developing on his knee. The patch quickly healed; however, we noticed more patches appearing on his face, ankles, elbows, hands and feet. Mum guilt immediately consumed me and I felt responsible like I had failed him. I was also going through a particularly challenging time personally and I wondered if my stress and anxiety had somehow triggered the condition in him. Was it that one time I turned into “shouty mum”?  As much as vitiligo is an autoimmune condition, he wasn’t born with any patches so something had to have triggered it and I was convinced it was my fault.

Since his diagnosis, I have noticed there is so much conflicting information online but I used the Vitiligo Society and my son’s Dermatologist’s as my primary sources and this helped me to navigate the situation with the correct facts.

When I became to understand that vitiligo wasn’t curable, I was heartbroken and so new it was something he was going to have to learn to live with, but I was grateful he was otherwise a healthy little boy. We brought him the Ken vitiligo doll and regularly read him the “Beautifully Blemished’ children’s book so that he could see his skin being represented. I also showed him my own skin imperfections to try and normalise his condition as much as possible.

He is now 4 years old and so proud of his “beautiful spots”…so much so that his brother gets upset he doesn’t have any! We currently manage his condition with Protopic and it has made a big difference to his face. We also find sunlight/Vitamin D makes a big difference so we try to get him outside as much as possible. We will consider light therapy when he is older if required.

He is at nursery and they talk openly about different skin so it hasn’t bothered him in any way and I hope this continues when he starts school this year.

Sami’s vitiligo is his unique selling point and is just one of tyy/e reasons that makes him such a beautiful boy. His confidence is inspiring and whilst I know there may be challenges ahead, I want him to retain that self-love and acceptance for all of who he is because vitiligo is only skin deep and his kind personality and loving nature is what will carry him through life and take him the distance.

Samira

My daughter Aisha is 5 years old we discovered her first patch at the age of 1 and a half. She is proud of herself and her skin and we as a family have always told her that she is beautiful. She loves discovering new patches and tells her friends and teachers at school that she is special.

In the last few months, she has developed the most patches so far on her arms. When I apply her creams, she says “Mummy don’t put on the cream I love my patches, I want more patches – I don’t want my patches to go as I am special”. I am trying to nurture and build her confidence whilst teaching her not to get offended or defensive if people stare – it’s about educating society about vitiligo and being confident in your own skin!

Prior to Aisha developing the condition, I didn’t know much about vitiligo apart from going to school with a couple of people with vitiligo. When I first noticed a patch on her lip the doctors didn’t know what it was. We were then referred to a dermatologist who, as soon as he saw her, confirmed it was vitiligo. I remember feeling nervous, anxious, and upset at the same time. 

The Vitiligo Society has helped in so many ways. The stories of people with vitiligo has made me feel so much happier and confident. I tried a number of steroid creams which helped, and her pigmentation did come back but it’s on and off. However, they did thin her skin and caused some damage because of the strength. Now I know more about the condition, I feel that the best way of dealing with vitiligo is to embrace it and accept that it is part of who she is. I will keep talking to her with positivity and re-enforcing that she isn’t different to others and that she is beautiful in every way possible.

Tonya

My 7 year old son has had vitiligo since 2020, which started as a small round patch. It’s been an emotional journey for me, but my son has been largely unaffected by it all! He occasionally comments that he doesn’t want his patches to spread and wishes for them to go away, and in those moments I feel sad and helpless. However, I try my best to show him just how many people have vitiligo and that they are happy and beautiful in their unique ways, as we all are. He has a beautiful little patch in the middle of his chest, which we call his superhero badge and he absolutely loves that! We use creams intermittently, but their effectiveness is limited, especially on the body. I don’t know how his vitiligo may develop over time, but I’ll do all I can to instil confidence in him & make him embrace his beautiful “difference”!

Happy Mothers Day to all the Mums, Mother figures and Carers of children with vitiligo. I hope you know how special you are…

Please support our work! You've enjoyed 1 article this month and we hope you have found it useful. Our work is entirely funded by memberships and donations, so please consider joining our charity today and supporting our work.

Become a Member