Children and Young People Youth Voice Board At Alopecia UK we are keen to meet the needs of all affected by alopecia. Over the last few years we identified that our services do not quite meet the needs of teenagers with alopecia and decided we needed to fix that. So in 2021 we recruited a board of young people who will help steer Alopecia UK in providing further services for teenagers. This will ensure we begin to establish a process that enables the youth voice to come through and be heard at the strategic level. It is important to us that young people living with alopecia have the opportunity to guide what happens at Alopecia UK, sharing their views on how things can be improved and getting involved with the creation of new projects. Our 'Youth Voice Board' members meet once a month to discuss, strategise and plan for more services for young people with alopecia. Find out more about our Youth Voice Board members below: Hi. My name is Annie, I am 14 and I have alopecia areata. I was diagnosed in 2019 when I was 13. I (and all my family and friends) had no knowledge of what alopecia was and we were definitely going in blind. I talked to multiple different specialists, doctors, and dermatologists, none knew what to do or how to help. I then started researching alopecia charities and fell upon Alopecia UK. The charity has helped me so much. From listening to talks and seeing their confidence, I have started campaigning in school for Alopecia UK as so many people are in the dark about it. I really want awareness to grow as we start this youth board, and I am so excited to be part of the journey. Hiya, I’m Chloe! I’m 14 years old and I have alopecia areata. I was first diagnosed with alopecia at 2 years old, and all of my hair fell out in the space of 2 months (alopecia universalis). From the ages 2-4 I had no hair. When I was 4 it started to grow back and gradually from the ages 4-12, I had some hair but not 100%. I used to have patches at the front and back of my head. When I was 12 my hair started to fall out again, so I made the brave decision to shave it off and apply for a wig. When we shaved my head, I still had some hair in the middle of my head but recently I’ve lost all the hair on my head, lost some of my eyebrows and lost some of my eyelashes. I have had many amazing experiences with AUK, for example going to Alton Towers with them and meeting lifelong friends. By being on the Youth Voice Board I would like to achieve more awareness about alopecia, and make sure people with alopecia know they are beautiful with or without hair! Hi, I’m Elina, I’m 17 years old and I was diagnosed with alopecia universalis at the age of 8. Being so young I was very confused as to why my hair had fallen out so suddenly and found it extremely scary. I hid under a very thick fringe for 8 years and never told people about my alopecia until the age of 16 in lockdown, in which I told everyone I know through an Instagram post. This really helped me in accepting my alopecia and since then I have definitely grown in confidence due to the huge support from my family and friends. Now that I have accepted that it’s very unlikely my hair will grow back, I am just working on embracing it! By being part of the Youth Voice Board, I hope to spread awareness and help young people like myself to ensure they know they are not alone! Hi, my name is Enya and I’m 14 and I’ve had alopecia since I was 9. My hair began to fall out in little patches and then it slowly turned larger. When the patches got bigger it became a lot harder to hide and cover up. Eventually, a few months later I was left with only little strays of hair at the top of my head, so I made a big hard decision to then shave my whole head! A few years later and I’m still fully bald, and only have a little growth on my head in summer when I am in the sun! Nothing else seems to work for me. Having alopecia has made me so much more confident and comfortable with myself. Alopecia UK have helped me in so many ways and, I’ve become friends with many people whilst going to their charity events! Hi, I’m Erin and I’m 17 years old. I ‘ve had alopecia since I was 3 where I had patches of hair over my head and covered it up with either bandanas or hair spray. However, these patches only lasted until the age of 10 when I became entirely bald, and this is how my alopecia has been since then and I’ve been wearing both wigs and bandanas to cover it since then. Throughout my time on the Youth Voice Board, I want to help people with the same condition as me and make the condition more well-known and educate people about it. Hi! I'm Gwen, I'm 13 and I have alopecia areata. My alopecia first started in 2019 as I developed 3 patches, 2 of which have grown back. I did fundraise for Alopecia UK in September 2020 and even cut my hair off for the Little Princess Trust in the December not thinking much of my alopecia until it returned around April of 2021. Since then, my hair has stopped falling out and I have started DCP treatment. When my alopecia returned for the second time, it was kind of like a moment of realisation that this was simply something I'm going to have to deal with for the rest of my life; the scary part is the not knowing! I'm really looking forward to working with some amazing individuals on the Youth Voice Board. One thing I would definitely like to achieve while working on the project is more awareness for alopecia as well as more representation in the media. I'm looking forward to what it has to bring! Hello, my name is Isla. I am 14 years old, and I have alopecia universalis. I have had alopecia for a bit over a year now. I got my first bald patch at the start of April 2020, and it was on the left side of my head above my ear and the size of a 50p coin. After having my first bald patch I noticed 2 smaller patches on my hair line from a photo my mum took and after a few weeks the hair line patches have grew back but the one beside my ear just got bigger and bigger. In October 2020 my hair started to come out in large chunks, I was terrified my hair was coming out. After a few days of my hair coming out in chunks I had no hair on the top of my head and no hair on the left side of my head, the next day I woke up and there were only a few chunks of hair left on my head so I asked my dad to shave it all off. And within a few weeks I lost my eyelashes and eyebrows and since December 2020 I have had no hair on my body. Hi I’m Lana and I am 17. I found my first bald patch in July 2020 and since then it continued to progress and get worse. My hair loss really affected my mental health which is why I decided to shave my head in March 2021 whilst raising money and awareness for Alopecia UK. After uploading videos of my head shave on TikTok and Facebook, I went viral and ended up in the Telegraph online. I continue to spread awareness on alopecia and its effect on mental health on social media with the aim of educating the public and supporting others suffering with hair loss. Hi, I’m Lydia I’m 13 years old and I have alopecia areata. My alopecia started when I was around 5, I first noticed a patch at the front of my hair, it was about a ten pence size and over time it gradually got bigger. I developed a lot more patches and my hair became noticeably thinner I went from long luscious light brown hair to hair that looked like it hadn’t been brushed in months. When I was about nine, I decided to shave my hair off because it was becoming way too much for me to cope with, it was the best decision I ever made it made my confidence grow so much and I felt like a completely different person. In March 2021, I went on the CBBC documentary 'My Life' to spread more awareness about Alopecia and let people know it’s ok to be different from everyone else. I can’t wait to help more people with Alopecia and try and change people’s viewpoints of today's so-called beauty standards. Hi! My name is Nelisa, I’m 17 and I have alopecia universalis. I enjoy makeup, fashion and increasing my never-ending wig collection. My mum told me when I was younger, I would have small bald patches around my head. Even though they could be easily hidden, her solution was to shave my whole head every time! At least this meant that having short hair was not a new experience for me. As a young African girl, it was quite normal for me to have braids. One day in year 9 when I finished taking out my braids, I noticed enough hair to make an afro wig (maybe two, depending on the head-size) on the floor. A few weeks later, I had no hair on my scalp and by the time reached year 11, I had no hair on my body at all. Losing my hair almost felt like identity theft as hair is a big thing in my culture. I refused to believe that it was me that I saw in the mirror. I found it difficult to find people who looked like me and felt like me in my community. I felt like nobody could truly understand how my hair loss made me feel. However, with the help of the very few black influencers and YouTubers who also had alopecia, I slowly began to accept myself and unapologetically be me. It’s a surprise that some nurses I’ve seen have never heard of alopecia universalis. I’m so excited to see awareness for alopecia grow and I’m even more excited that I can help with that! Hey! My name is Shobiya and I’m 17 but my story starts when I was 11. Not many people know to this day I have alopecia. I’ve always felt embarrassed and ashamed, an 11-year-old girl already experiencing hair loss. What’s wrong with her? I wish I could go back and tell her something no one ever told her “It’s perfectly normal.” Maybe if I heard that I would’ve felt less lonely. But now, in the present, I’d like people to hear my story: a person scared to admit to herself she has alopecia but now she’s apart of AUK's Youth Voice Board who wants no one else to ever feel like they need to sit in their bedroom and feel like there’s something wrong with them. Hi! I’m Skye, I’m 15 years old and I’ve had alopecia areata for 4 years. I was first diagnosed in February 2018, but I had started noticing patches in late 2017. My alopecia started as a small patch at the back of my head and then progressed to around the sides and, eventually, total hair loss. I decided to take control of it by shaving off the remainder of my hair. Since May 2018 I have worn wigs to school, and I have been lucky enough to receive a free one from the Little Princess Trust. I am now getting to the point with my alopecia where I don’t want to hide it anymore, and that’s a really big step for me! I’m really grateful for Alopecia UK and the opportunities to meet people with alopecia as I have made great friends. Finally, I’m so thankful to be part of the Youth Voice Board because I believe that we will be able to help lots of young people with alopecia. Hello, I’m Sylvia and I’m 17 years old I’ve been diagnosed with alopecia areata in September 2018. My hair loss is kind of specific because I only lose hair in the summer and in the winter. At first, I was very afraid to tell people I have alopecia but now I’ve joined the Alopecia UK Youth Voice Board because I want to be more open about it and hopefully help some young people who are struggling to deal with it. Not many people realise how much of an impact alopecia has on a person, both mentally and physically and I think the Alopecia UK Youth Voice Board will help young people realise that they’re not alone. Hi! I’m Zainab and I’m 14 years old. I have had alopecia since 2018 (I was 11). I have alopecia areata. Like lots of people with alopecia, I really struggled to accept it. Over time and once I found the charity and other people with alopecia this had really help me. By being on the Alopecia UK Youth Voice Board I hope to raise greater awareness and reach out to children, young people and adults to help them in any we can. For example, sharing our own experiences. I’m also very keen that people understand that alopecia doesn’t stop you doing what you love! Alopecia UK appreciates and values diversity and inclusivity. We want to make sure that the Alopecia UK Youth Voice Board recognises the needs of young people with alopecia across different communities, backgrounds and genders. You may notice that currently our board is made up solely of young women. Unfortunately we did not receive any applications from young men during our recruitment process. As such we still welcome applications for our Youth Voice Board from young men aged 13-18, living with alopecia who would like to bring their lived experiences and opinions to the board. To find out more please contact [email protected] Please note if you do not meet the above criteria but are interested in joining the Youth Voice Board please still get in touch to be added to our waiting list.