When the first signs of Vitiligo appeared when I was 2 years old, my parents didn’t over react, even though they had no idea what it was. As a mixed race child, with fair caramel coloured skin, there was little chance of the distinctive white patch, no bigger than a ten pence piece, appearing unnoticeable.
Naturally, my parents had questions they wanted immediate answers too. Was it a discoloured birthmark? Was it irritating my skin? and most worryingly of all…..was it going to spread beyond my hand?
My Mum quickly booked an appointment with our GP in hope that a prescription of antibiotics would remedy the problem! However, unbeknown to her, the problem was much more severe than that and would develop into a condition she had never even heard of.
So how does it feel when you notice the first patch on your babies beautiful skin? Confused? Angry? Frustrated by the lack of information available on the condition?
How does a mother respond?
As the mother of me, here’s how mine responded….
Finding the first patch….
As a parent, noticing the first patch naturally sends you into a state of panic. Shock even especially as you have no clue what it is or why its developed. Back when I was a child, Vitiligo was a relatively unknown condition and so when she took me to our GP, he wasn’t able to confirm what it was. The advice she was given was simple; keep an eye which is the last thing any parent wants to hear. She wanted to walk out of the surgery with a diagnosis and a remedy that would clear it within a matter of weeks! Instead, she had to remain patient and watch to see if it was something that would develop or stabilise. She was incredibly frustrated by the lack information.
I was officially diagnosed with Vitiligo 24 months later. Up until the point when I was diagnosed, I’d made a second visit to our GP who still wasn’t able to confirm it was that. The patch had slowly started to spread, covering my arms, legs and worst of all, my face. A referral to a Dermatologist at Great Ormond Street Hospital was when it was confirmed as Vitiligo and that it was incurable.
Being the mother of a child who is ‘different’…
One of the hardest things for any parent to face, is ridicule towards their child. It makes them feel helpless. My Mum found the stares and inquisitive questions difficult to accept initially, but gradually developed the understanding that people were curious. Occasionally she would turn a blind eye if she noticed people looking, but other times, depending on how intrusive people were being, she would explain what it was. My Mum recalls an incident on the bus when I was 3 years old. Sitting in my pushchair, with a lolly pop for entertainment, I had caught the attention of two women who were initially talking amongst themselves. They noticed my patchy legs and whispered to one another that my parents were irresponsible for leaving me to burn in a fire! Naturally, my Mum was infuriated by the assumption and made a point of telling them that wasn’t the case!
My Mum got used to people looking. She refused to cover me up and allowed me to wear shorts, t-shirts and swimsuits on holiday. As far as she was concerned, I was an ordinary child with a skin condition. Simple.
There were very limited support groups available in the UK when I was a child, but my parents did attend events at the Vitiligo Society which helped her, not only understand the condition, but meet with other parents who had children with the same condition. Being part of a support network meant she felt supported and not so alone when it came to raising a child that was ‘different. The Vitiligo Society continues to run the annual Vitiligo Society Conference (normally every October) and also runs a parents group every Tuesday & Thursday from 10:30 to 14:30. For more information, please call; 0800 018 2631 or 020 7798 6051. Alternatively, you can email: firstname.lastname@example.org
The best piece of advice from a mother to another….
Don’t treat your child like they are different. Natalie’s Mum says “I chose not to hide Natalie away by giving her the freedom to wear whatever she wanted. She wore shorts during the summer and swimsuits on beach holidays. I wanted to instill confidence into her from a young age and make her understand that being different doesn’t mean you are any less beautiful. As a parent you will naturally be protective and I knew I would have to be extra strong for her, so that she could deal with the potential challenges and judgement she may experience as an teenager and later, a young woman. I prepared myself for those times when she would come home and tell me that kids at school had said something spiteful about her skin. Being a ‘step ahead of the game’ makes dealing with those issues easier”.
How did your parents react to your very first patch? Feel free to share…..