Alopecia UK's Young Person’s Ambassador is Joelle, a singer from North London. Joelle has had alopecia since she was 8.
“At the age of 8, I came back from a beach holiday and immediately after getting home, my hair started to form matted clumps. My mum tried using conditioner to detangle my hair, but it started to fall out in the shower as she combed it. At first the patches started to appear in the centre part of my head and mum was able to cover them up with wide hairbands and the clever placement of hair clips.
Very quickly my hair loss began spreading, so I moved on to wearing a bandana for school. It wasn’t long before the other school children started to make remarks asking why I was wearing a bandana. I went to the doctor several times and was given some blood tests which didn’t show any deficiencies. I was then sent to a dermatologist, Dr David Fenton, and he tried several different treatments over a few weeks.
By now my eyebrows had also started to fall out along with big clumps of my hair, and in a matter of weeks I had lost all my hair including that on my body.
I was diagnosed with Alopecia Universalis, but Dr Fenton could not say for certain what had caused my hair loss. We tried every treatment available but to no avail. I quickly came to realise that my hair loss might be permanent. After about a year of wearing hats, I finally got my first wig which was made of real human hair and it was strange seeing my face in the mirror again with hair.
Unfortunately, I was also experiencing terrible bullying at school, and was referred to as “cancer girl” while enduring stares from strangers in the street. As a result of my alopecia, I became painfully shy and introverted. I wouldn’t talk about my alopecia with anyone at all and none of my few friends would even mention it. In fact, a lot of the children who I thought were my friends didn’t turn out to be such good friends after all.
My mum came in to the school and gave each class a lesson about alopecia. It helped a bit, but each new school year when new children started school, the bullying and stares would start all over again. It’s a surprise when something like this happens to you. You learn a lot about people, sometimes things you don’t want to learn, especially that adults could tease just as much as the children. If they didn’t understand they would poke fun as their way of making sense of what they were seeing. Adults making comments hurt the most and I would literally come home from school and slide down behind the front door in floods of tears.
Those early years with alopecia were absolutely the worst but, with time, I learned how to put on false eyelashes and draw my eyebrows so well that most people thought I had them done professionally.”
Joelle experienced bullying at school and has become an active campaigner for both bullying and alopecia awareness here in the UK and the US.
Joelle’s campaigning began when she was 13, after uploading a home-made music video “Big in LA” to YouTube, which received over 200,000 views and was featured in worldwide press. Joelle made her first national UK TV appearance in August 2013, with a guest spot on ITV’s Lorraine. Joelle has also been featured on ABC News in the US, in support of her campaigning about bullying awareness.
During Easter 2014, Joelle was involved in some rather unusual chocolate fun in an Easter themed alopecia awareness campaign, which was featured in the Metro and BBC Radio London, where she was invited to make a special appearance on the Eddie Nestor drive time show. Joelle has also been in alopecia articles on Buzzfeed and has also written several posts for the Metro.
Joelle says: “The past few years have been a really rewarding time for me. I have had so many incredible experiences, and met so many amazing people who support raising awareness about alopecia and about bullying. I understand that everybody has different experiences, and some people experience teasing and bullying in schools and in the workplace. This happened to me. I feel strongly about this condition, so much so that I have become an active campaigner, sharing my story and my experiences online. I am now able to talk openly about it, and how it affected me personally. It took me 6 years before I was able to take my hair off in public and be proud of how I look.”
Events and Support Manager Jen Chambers explains: “It is great that Joelle has become a young person’s ambassador for Alopecia UK. She has already been involved in lots of media work to raise awareness including printed press and videos. She is a fantastic role model and a great spokesperson for younger people with the condition. Joelle shows young people that having alopecia should not stop you achieving anything!”
Joelle continues: “I am thrilled and honoured to be part of Alopecia UK as the charity is close to my heart and the work it does is so valuable. Working together we can raise awareness for alopecia. I recently volunteered at Alopecia UK’s Alton Tower’s event and I was amazed to see that over 180 people turned up! It was so nice to see that there are so many supporters in this community and that we all really are one big family. I love being at Alopecia UK's ‘Big Weekend’ event every year in September, as it is a great opportunity to meet people who have had experiences with alopecia and to have a fun filled weekend. I hope to see you at the next event!”
Joelle ran in team Alopecia UK in 2016 to raise money and support for Alopecia UK in the Vitality 10k London run.
“I am keen to share my own experiences in the hope that they will help other young people. For example, the dilemma of how to tell your family and friends that you are losing your hair, overcoming bullying, and even learning how to stop dust going in your eyes by finding a practical way to glue on eyelashes that last all day.
I have accepted that alopecia is a big part of my life, but it doesn't define me."