My name is Vicky and I have had alopecia now for half my life (22 years). 

When I went to the hairdressers for my regular cut, they noticed a bald patch at the back of my head. The hairdresser noted that there was a scar there and I assumed the patch had always been there and I had just never realised. However, the more I felt the patch the more I knew it wasn’t something that had been there for a long time. 

Fairly quickly, over the next few months, I noticed more hair coming out when I washed and brushed my hair and I’d wake up to hair on my pillow. When I ran my fingers through my hair I’d see mounds of hair come out in my hands. As anyone who has experienced this will know, it was distressing to witness. 

I booked an appointment to see my GP and hopefully get some help. My GP was very friendly, diagnosed me with alopecia areata but told me that there wasn’t much that could be done. I went home deflated but determined to find out as much as I could. 

22 years ago, the internet wasn’t what it is today. There was no TikTok, Twitter or Instagram, and YouTube and Facebook had yet to take off. I searched high and low for information about alopecia but found very little. I found only one UK website which contained information about alopecia. It required you to send off a stamped addressed envelope and they would send you back some information. I did this and got some printed information leaflets but I felt there should be more. This printed information did nothing to help with the feelings of isolation I was experiencing. 

I spoke to my sister about how little information there was, and how alone I felt with no connection to anyone else in my situation. I wanted the chance to connect with others who understood what I was going through. Perhaps, if I could connect with others going through the same, we could help each other. 

Between me and my sister, we batted about the idea of starting an alopecia website. The information I found suggested 2% of people would experience alopecia areata at some point in their lifetime; that’s millions of people worldwide. I felt like I wanted to find some of these people, to be able to talk to others who were maybe experiencing the same as me. 

With the help of my sister, her now husband, and my mum and dad, Alopecia UK was formed. Initially, it was simply a website full of information with an email address and a phone number for people to contact. It later expanded to include an online forum, support groups and so much more. After a year, we applied for registered charity status and Alopecia UK was granted this in September 2005.  We recruited Trustees and more volunteers and we just kept growing. Slowly as life developed, my mum, dad and sister were able to step back and new people, with brilliant new ideas, took over and helped further develop the charity.

After 10 years of Alopecia UK, we had an incredible team involved with the charity and I felt able to hand over the reins. That doesn’t mean I’m not involved at all any more. I closely follow the work of the charity and feel hugely proud that the charity continues its work today to improve the lives of those affected by alopecia. I am very lucky to help judge the Hannah Dennis Alopecia Awareness Award and hear about the amazing young people living with alopecia today. I attend the London support groups occasionally and, when I can, I help out with requests from the team to perhaps attend an event, or provide some words (like this blog). 

When I first lost my hair, I really struggled. I felt I had lost my identity and it was difficult to look at myself in the mirror. I worried about what people would think and say, and whether anyone would want to be my friend. I’m pleased to say that not only have I moved on from these challenging feelings, the world has moved on too. Both men and women with alopecia are more widely accepted. They feature in fashion shoots and advertisements, on TV and radio talking about their condition and their experiences. Famous faces have talked about their experiences, and Alopecia UK has some great ambassadors doing amazing things. I am glad that some things have positively changed in the past 20 years. But I know that people with alopecia still face challenges, especially with fair and equitable access to treatments and wigs. I hope Alopecia UK is around for as long as it is needed. 

I have come into contact with some fantastic people who I would have never met had it not been for my alopecia. When I look back and think how devastated I was to lose my hair, I can now see how losing my hair has helped me become the person I am today.