My involvement with Alopecia UK began in 2005, when I was in my early thirties. I hadn’t noticed my hair loss, but my Mum certainly did! It was a windy Mother’s Day and it had blown the back of my hair to reveal round bald patches. I was walking in front of my Mum to shield her from the wind, because that is what I am trained to do. My Mum lost her hair in her twenties and will not step out in public without wearing a wig. Growing up, my sister and I were also trained to open the oven door, to ensure my mum's wig didn't get damaged by the heat. And we were never to answer the front door unless Mum was ‘ready’ - I remember the scramble to find where Mum had left her wig!

As you can imagine, my Mum was devastated to see my own hair loss – I can specifically remember her saying ‘There won’t be anything that will work, you will be offered: steroids, steroid injections, topical contact therapy’.  In fact, that evokes a childhood memory for which I understand Mum's panic now. Aged 6(ish) I was sitting on the lawn making a daisy chain and Dad came running over and demanded to see my sweets that I didn’t want to part with and held tightly in my fists.  Turned out, Mum had misplaced some of her Prednisolone tablets and panicked that I was munching on them. Safe to say, it was only Smarties.

Back to that fateful Mother’s Day I can recall retorting back to Mum that surely research will have moved on in 30 years, but it hadn’t. The next day during a lunch break at work (as home computers were not available for the masses and your phone was just a phone!) I found the Alopecia UK discussion forum. I could see others who were trying to figure it out and trying to find answers. I started to see threads of common conservation and spotted a chap called Dave who had set a running challenge to raise money for research and, along with another forum user called Donna, we set about raising awareness and funds. 

I contacted Alopecia UK to ask for any flyers, banners and promotional merchandise. Ruth Bowdage replied to update how small the charity was and that they did not have much, but they did have a pop-up banner however could not afford to post it.  Not a problem, I jumped on a train from Cambridge to London and met Ruth at a train station to collect. It was only polite to have a coffee and Ruth told me how through their daughter Vicky, who had lost her hair a few years beforehand, they set about forming Alopecia UK to be an information resource on the internet as nothing much was found by Asking Jeeves! 

The first website provided an information platform and they become involved with British Association of Dermatologists (BAD) to advise on the material they published on the website.  It quickly grew with people emailing, phoning and writing in for support and advice and they applied for charity status which was granted in September 2005.  I was asking questions and Ruth said they were looking for people to help run and manage the charity as they needed to diversify (for good governance sake) with individuals who were not related to the Bowdage family.  I discussed with my partner, who bluntly said, ‘Why don’t you do something rather than moaning that nothing can be done?’  Challenge accepted!

Back in 2005, Gail Porter was hot in the news and journalists were stalking the charity's forum looking for stories. I stepped forward to help raise the profile of the charity, as it was helping me come to terms with my own hair loss, and to raise awareness of alopecia.  Doing media articles was good therapy as I was struggling with my identity (still am) and finding it hard to cope (at times, still do).

Initially I helped the Bowdages out with welcoming new community members, discussion forum monitoring and attending committee meetings. I took on the role of attending the BAD conference and booked annual leave from my day job so that I could attend. It was great to chat to dermatologists who have an interest in hair loss disorders, and I would go on to make many great contacts and collaborations. This helped the charity build up knowledge of hair loss specialists in the UK. There were 113 posters on display at the conference and I walked around and read them all, as what else do you have to do between plenary sessions on your annual leave! There were only 3 posters relating to hair loss which made me see that much more engagement about alopecia and research was need within dermatology. Today, there is much more specialist interest and BAD now has a subgroup - the British Hair and Nail Society (BHNS). It is great to see AUK continue to be involved with the organisations that I built links with all those years ago. 

Attending BAD conferences, it was also good to speak with other patient support groups, sharing advice and knowledge with each other. Many BAD patient support groups are very small charities and we all face the same problems: funding, resources, research and awareness. Over successive annual meetings, my knowledge on dermatology was increasing and I was encouraged by the British Dermatological Nursing Group to switch my nursing speciality from neuro to dermatology – so I did.

I wrote articles and my first publication in the Nursing Standard was on alopecia areata. I would meet the people at conferences who I had referenced in my articles and can recall being very star struck when meeting Valarie Randall and Mike Sladden. Poor Mike, I had had a large glass a wine when I spotted his name badge and literally squealed - I don't think a dermatologist had ever been greeted with the excitement of a fan meeting their favourite pop star!

I found out about the European Hair Research Society (EHRS) meeting in 2011 in Jerusalem, where all the posters were about hair loss – yippee what a find. I contacted Professor Zlotogorski to see if it was ok for me to attend and received a positive response.

I didn't know anyone who was attending. My husband was going to join me and I booked us onto all the social excursions which had been factored into the week. Sadly, my father-in-law was taken gravely ill and my husband didn't attend. To this day, I still struggle with my decision to go ahead, but that sacrifice paid off a few years later. Thankfully I got back to the UK in time to say goodbye.

I remember attending the pre-conference school and during a tea break had a slight panic attack in the loo - what was I doing here?! At a meeting with all the leading hair loss experts. Pulling myself together I got a coffee and a felt a tap on my shoulder. Professor Andrew Messenger and Dr Paul Farrant - two people I had met before from working on the BAD guidelines for the management of AA. They introduced me to Dr Gill Westgate, President of the EHRS at that time and she kindly took me under her wing. Wow, I learned The University of Bradford have a Centre for Skin Sciences where Gill worked. Another discovery! A day later I was joined by a lovely lady called Kathyrn, who joined me on the social excursions. At one point, we were in a queue and stood next the Professor Angela Christiano. No glass of wine onboard this time and I froze. Kathryn jump in and got the conservation flowing. Dr Christiano played a key role in linking JAK inhibitors to alopecia areata and pushing for their exploration as a treatment option.  It was simply an amazing conference which opened up doors for the charity. A total of 485 participants from 32 European and non-European countries attended all taking about hair and hair loss. Mind-blowing.

When the conference was over, I had an evening flight home and was hanging out by the poolside at the hotel. Valerie Randall swam past and we got chatting, and it was this chat which led to an invitation for me to present at the World Hair Congress a few years later, representing Alopecia UK.

The 2013 World Congress for Hair Research (WCHR) took place on home soil in Edinburgh. I had been invited to give a speech in the opening ceremony and present in a workshop on hair disorders - where I met another hero of mine, Vera Price, another leading hair loss researcher. It was a truly special conference where I met so many individuals who had dedicated their entire careers to hair loss. 244 posters - there just wasn't enough time to read them all!

Alopecia UK helped to exhibit photographer Daniel Regan's Alopecia Project, along with a poetry exhibition. Amy Johnson (a volunteer back then) and fellow Trustee Helen Wallwork helped with the AUK stand. Driving back home to Cambridge, post-conference blues set in as you just want to stay in that bubble of enthusiasm for hair loss research. Not too long after, a chunk of profit generated from the Congress was donated to AUK and those blues disappeared.

This generous donation enabled the charity to formally fund a Priority Setting Partnership (PSP) which the amazing and talented Dr Abby Macbeth pushed forward with the rest of the PSP steering group. It was hard work and endless hours of data processing in the evenings for me. I'll be honest, it nearly broke me or if I am brutally honest it did break me! But that pain was worth it.

The hard work from everyone involved was only made possible by the wonderful engagement of the alopecia community. Not one but two Top Ten Priorities for Hair Loss Research were published. PSPs are a key process in the UK that helps to aid research funding applications.  I attended the next WCHR in Miami 2015 to answer questions at the poster presentation along with Jen Chambers.  By this time I was getting tired with time competing responsibilities at work. I needed to focus on my qualifications in clinical assessment and prescribing that consumed my evenings and weekends. When I was in Miami, I reflected on all I had achieved in my 10 years with the charity and I made the decision to step down as I felt I’d done as much as I could practically do. The charity was in a secure and safe place for me to step down from day-to-day involvement handing over to a new generation of talent.

I am very proud of my time volunteering for the charity, especially my contributions to the research side of things and building relationships with key experts. It is wonderful to catch up with new charity staff and volunteers at dermatology conferences where I am now a delegate. I have remained ‘involved’ in a personal sense in emerging research in alopecia and assisted with a Cochrane review for alopecia areata. I also applied to be a committee member for the NICE Technology Appraisal Committee, as in my role at work I move treatments forward once they are approved by NICE for use in NHS. I wanted to understand the evidence-based research behind the decision making and cost-effectiveness for the NHS.  There was an application and interview process and you are assigned to committee by geographical location. Do you believe in fate or stars aligning?  Well, let me tell you…. my first committee meeting and the first drug being appraised was for a JAK inhibitor for alopecia areata.  Fate? Luck? Fix? No, just a random coincidence as my committee role started the following month and I decided to join as an observer for that meeting (without knowing what topics were listed).

The NHS now has a licensed treatment and I find myself prescribing that very same medication to individuals that I monitor for alopecia areata. NEVER did I think that would be possible or think back in 2005 that it is what I would end up doing. 

It is such an important and exciting time. There continues to be more research and clinicals trials, as we see more drugs developed and repurposed for alopecia. Researchers are discovering and learning more and more, best of all moving forward at pace not just for alopecia areata but also for other types of hair loss.

Now I can say to my Mum that research really has moved on.  Happy official 20th birthday Alopecia UK!