Following a diagnosis with of vitiligo at just 16 years old, it took Adam 20 years to reach out to The Vitiligo Society and find other people who understood his experience of living with vitiligo. Now a volunteer & fundraiser for the charity, he shares his story with us…

“I was diagnosed with vitiligo around 1999 when I was 16 years old. I first noticed a small white spot, no bigger than a centimetre in size. It grew in size over the following two years and then stopped. Growing up, I always felt different to other people. I have segmental vitiligo, and my biggest patch is from my lower lip to my chin.

I remember looking at a photograph of myself around this time and thinking, ‘I wish I just looked like everyone else.’ I was scared that it was getting bigger and worried about how large it would eventually get. It was hard to tell if it was growing or if it had stopped because it was happening quite slowly. I would try to avoid direct sunlight as I knew it would tan the rest of my skin and make my white patch more noticeable.

My beard grew white there too, so I always shaved it very close because I didn’t want people to notice it. I would feel very self conscious if I left the house without shaving as it became very noticeable with a single day’s growth. Occasionally people would ask what I’d done to my chin or say things like, ‘Why doesn’t your beard grow there?’ or ‘I thought you’d drank bleach.’ These experiences really affected my confidence and self-belief.

Over the years I went to the doctor a few times to see if there was any treatment options available. The answer was always no, but I was still prescribed protopic cream as a sort of last resort. It came with side effects and made no difference to my vitiligo at all. One doctor thought I had alopecia as they couldn’t see my stubble, even after I’d told them that my hair in that area was just white.

Overall I felt dismissed by doctors I saw. I think they could have helped me more by signposting me to the Vitiligo Society. At the time I thought I wanted to be cured, but I actually just needed to accept the way I looked.

I found out about The Vitiligo Society around 20 years ago, but I never approached them. I felt different, even from others with vitiligo, as mine affected only my hair and didn’t spread past my chin. I felt that other people with vitiligo had it worse than me, and I was silly to be concerned about my relatively small white patch.

I was wrong! When I finally reached out, the society was very welcoming and I learned that everyone has their own story to tell. The people who work for the Vitiligo Society are a wonderful community and embrace everyone who seeks their help. I took part in a survey funded by the Vitiligo Society, one of the biggest of its kind of the vitiligo community. The findings of the study showed me that my experience was mirrored in most people who have the condition.

To be honest, I’ve only recently come to accept my vitiligo. I started by reading other people’s stories on the Vitiligo Society’s website, which helped me start to process how it had affected me. With some support from friends and my loving wife Nicola, I decided that the only way to fully accept it was to grow the most unique beard and show my vitiligo to the world. I am now a volunteer myself, and I answer emails from people like myself who’re looking for advice or information.

I felt I wanted to do more to help others who felt like I did all those years ago, so I decided to take on a challenge to support the Vitiligo Society’s work. I entered the Oswestry 10K run but I got my application in quite late, so I only had two weeks to train! I try to keep generally fit anyway, but I was keen to clock a time under an hour if I could.

I got a Vitiligo Society running top and went on the radio prior to the event to share my story and what I was doing to support the charity’s work. I was excited to share my experiences and raise awareness of vitiligo, but it was difficult to say everything I wanted to say because I only had a short time on the show. Understandably, I could talk at length about how excited I was to run for a cause that meant so much to me!

The day of the run itself was amazing. I woke up in the morning bright and early and met some friends who were also running. There was a great buzz on the day and it was fantastic seeing people I knew running for all sort of different causes, or simply running for themselves. I hadn’t entered a 10k for quite some time, and I think the supporters really helped.

I sprinted the last 500 meters and finished with a time of 58 minutes. Just under an hour as hoped! At the time of writing this, I’d raised £205. It doesn’t feel like a lot, but I don’t like to pressure people and I entered the race with only two weeks to go. When I started the challenge, I had three goals:
– To raise some money for a charity that I have a personal connection with
– Raise awareness of vitiligo among the general public
– To help people with vitiligo reach a place where I am now where they accept who they are.

I’ve wasted so much time worrying, and I hope others can embrace themselves earlier than I did.

I’m so pleased with what I’ve achieved. If anyone out there is thinking of taking on a challenge like this, I’d say, “Go for it. You’ve got nothing to loose.” You’ll raise some money for the Vitiligo Society’s incredible work and get some exercise while you do it!”

You can still give to support Aram’s fundraising efforts by visiting: https://www.justgiving.com/page/adamvitiligo