Sixteen years to the day since that first ever head shave on 9^th July 2010. Who else has an alopecia anniversary?  Some days it feels like only yesterday and yet it’s hard for me now to remember what it was like to have hair.

When I first lost my hair, the world looked very different for people with alopecia. As it’s my anniversary, I want to reflect on things that have changed during that time. 

In 2010, there were fewer conversations, less understanding, and very little representation. Social media was still in its infancy, support groups were much harder to find, and the lovely Gail Porter was everyone’s go to reference for alopecia.  

In those first couple of years, every explanation felt exhausting, every stare felt personal, and finding someone who truly understood felt to me like the most important thing in the world.

I think one of the biggest differences between 2010 and 2026 is the visibility of visible differences, including alopecia. I can vividly remember in the first year of losing my hair, constantly looking across the streets of Leeds to try and spot another person ‘just like me’ on my lunch break – I never did.

In 2012, I watched Joanna Rowsell MBE take to the podium, without her wig, at the London Olympics to receive her gold medal and it felt like a turning point for me. What an incredibly positive example of someone with alopecia achieving at the highest level – the ultimate story of not letting the condition hold you back. I felt inspired.

Today, there are many more people sharing their stories openly. Children are growing up seeing bald women, men and young people represented on television, social media, and high street shop campaigns. What once felt hidden has become something that more people proudly own.

One thing I have noticed is that I receive fewer unsolicited comments when out socialising with my friends. It used to be that an evening out would guarantee at least one uninvited interaction about my hair loss. This now rarely happens. (Although I feel I must point out that my colleague Sue and I had three conversations with people who approached us assuming we had cancer whilst at a Take That concert, so we still have a way to go!).

Alopecia UK has changed enormously in the past 16 years too. When I first started volunteering for the charity in 2012, the charity was completely volunteer led. Having a dedicated staff team working to improve the lives of people affected by alopecia seemed like a bit of a pipe dream. Whilst we remain a small charity, we now have a staff team of 7 part-time and 1 full-time employees. A charity with a staff team working hard on its behalf is exactly what the alopecia community deserves.  

Another big change is that there are now NICE-approved medicines for alopecia areata. There was a point where I wasn’t sure if this would ever happen. Two years on from the approval of ritlecitinib, it’s amazing to see those in our community having success on this treatment. I hope the recent draft guidance from NICE to recommend deuruxolitinib will mean more lives are changed with medical advancements.

Whilst I am yet to opt for a new treatment for myself, I am delighted to see research and clinical trials leading to life-changing medicines, and I really hope that in the future we see NICE-recommended treatments for different types of alopecia, including scarring alopecias.

Despite a positive shift in society towards visible differences, along with advancements in medical technology, I think we still have a lot of work to do. Many people continue to face misconceptions that alopecia is "just cosmetic." Children are still bullied because of hair loss. Access to wigs, mental health support and specialist care remains inconsistent.

Awareness isn't simply about people knowing what alopecia is. It's about helping them understand what it can feel like to live with it. And it’s why today, on my 16^th anniversary, I’m so proud to be delivering a talk on patient experience on a webinar for the Royal College of Nursing.

In my talk, I recall a day I lost to alopecia in 2010 when I could not stop sobbing and remained in my bed all day. On my sixteenth anniversary, I don’t celebrate alopecia itself. I celebrate that I have no more lost days. And I celebrate how far the alopecia community and Alopecia UK have come over the last 16 years. That feels sweet to me.