I’ve had Alopecia Universalis since October 2019 when I lost my hair suddenly, and quickly, whilst on holiday. 

I think the biggest hurdle people with alopecia face is the uncertainty that the condition brings. Some people will have patches come and go. Some will experience extreme thinning or receding and some lose all their hair very quickly and with no obvious reason. This can cause crippling anxiety and a feeling of helplessness, and I hear so many stories of people not being taken seriously by their GPs who are generally the first practitioners we see.

I wish I could change the fact that as well as horrendously long waiting times for dermatology appointments once people do see a specialist there is often a lack of empathy or treatment options offered to us.

There is also a postcode lottery whether you are looking for advice, treatments, or wig provision throughout the UK. I believe everyone should have access to free wigs if they want them. I am lucky to live in Scotland where I have been able to access free wigs and this has reduced the financial burden that comes with alopecia, a burden that is often overlooked.

Alopecia UK has helped me enormously. The charity helped me to realise I wasn’t alone with this condition. That really validated a lot of the difficult feelings I was going through. Connecting with others helped me work through those emotions and the information I found on the charity website and practical advice helped me navigate the products and services that could make things easier day today.

Alopecia UK is the only UK based charity available to the hair loss community and without it so many would be left in the dark while they wait for dermatology appointments.

The charity keeps our community up to date on research and fight our corner for fair provision of treatment and wigs. They provide the most welcoming and inclusive face-to-face and online support groups as well as organising events throughout the country for children, families and adults. I am continually impressed with what they manage to achieve with such a small staff team, and why I am committed to helping in a volunteer capacity. 

Looking back, the biggest challenge I faced on my journey was thinking that I’d never be me again. Never feel the same or look the same. Never be able to do the same things. I felt like I couldn’t be spontaneous and couldn’t travel which was my biggest passion. 

I was very fortunate to access a dermatology referral and a wig prescription within 3 months and, later, have counselling which all helped hugely.

But it was finding Alopecia UK that made the biggest difference to me. From the early days scrolling through the posts on the charity’s private Facebook groups and connecting with other “newbies”, to plucking up the courage to walk into the Glasgow support group, and then attending the Big Weekend in Birmingham, each time gaining confidence, feeling supported and feeling like part of a big kind family. Finding others who know how you feel is the best therapy.

I have met the most inspiring and lovely friends along the way and am so grateful for their support.

I am proud to be part of a great team of volunteers who moderate the Facebook groups and it’s a great and rewarding way to give something back to the charity. I have also enjoyed volunteering at the family residential event that the charity organises each year.

And this September I’ll be raising both awareness and funds by ‘Going the Distance’ and holding a 24 hour kitchen disco as part of Alopecia Awareness Month. You can leave a donation on my fundraising page here. 

I never believed I’d feel like myself again. But I do. And a stronger better version at that. I can still be spontaneous and I travel more than ever. Life is good!

It is entirely possible to live well with alopecia and I now hope that both individually, and as part of Alopecia UK, I can be that supportive and inspiring girl who helps others who are on their own journey.