One day, back in April 2024, I was getting ready for work and noticed a bald patch behind my right ear, a perfectly round little spot, smooth to the touch. I took a picture to keep an eye on it and thought nothing of it. A few days later I thought it had got bigger, so I took another picture to confirm it had grown. I contacted my GP who I felt was very unhelpful. They went onto Google, printed out a page about alopecia areata, gave me a steroid cream and sent me on my way. When I tried to explain how scared I was feeling, they just replied “It’s due to stress and it runs in the family” (none of my family have it)?! and the most unhelpful “Try not to stress!”

I tried the steroid cream and it did absolutely nothing. My hair then started shedding… fast!! I used to dread every hair wash day. Clumps of hair falling out in my hands, hair stuck on the walls of the shower, and my long strands clogging up the drain and my hair brush. It was totally heartbreaking! I went back to the GP and explained it was getting worse, and was referred to a dermatologist.

I had zero knowledge on alopecia, as I didn’t know anyone who had it or had been through it, so it was even more scary, not knowing what to expect. The dermatologist tried steroid injections, in the bald spots (by this time I had lots of bald patches). Unfortunately this didn’t work and the hair was getting thinner and thinner by the day!! I ordered some cheap synthetic wigs online and said to mum ‘just in case it all goes over night, I’m prepared’. Eventually all my hair fell out. I never ‘braved the shave’ as I was clinging onto it until that very last strand fell out. I ended up wearing wigs daily, along with hats and head scarves.

I accepted my new appearance and just got on with it. Looking back, how I coped I’ll never know. My close family and friends were amazing throughout. I said to my mum one day “As long as my eyelashes don’t go, it’ll be okay”. They then fell out too! Along with my eyebrows, and all body hair. Who knew I would miss nose hair?! Haha! I have always been very open about talking about it, as I believe there is not enough knowledge on alopecia. I made a separate Instagram page (my_alopeciajourney) to document my journey and show others it is ok. I found many people on social media with their own alopecia pages and the support from strangers was incredible! That definitely helped me through it, along with the Alopecia UK Facebook groups. It was such a comfort (weirdly) to see others going through the same and just getting it!

Lots of people without any experience of alopecia said to me “It’s just hair, it’ll grow back, at least you’re not sick” or my personal favourite was “At least you have a good shaped head to be bald!” and thinking it was ok to touch my head. I just smiled and agreed but inside I was livid!

After numerous dermatology appointments and the injections not working, I decided to go private as I had Googled about the only NICE-recommended treatment for severe alopecia areata – ritlecitinib. My dermatologist didn’t suggest this, I found out about it myself. I went to my private appointment and mentioned the medication. I was told that I would definitely meet the criteria and then luckily I was referred back to the NHS for this treatment. I had blood tests, chest x rays and general check-ups to make sure my body was all good to go, then I started on ritlecitinib (brand name Litfulo) in December 2024.

Fast forward to now, and I have all my body hair back, and have a pixie cut! I’m booked in for another trim next week! I consider myself very fortunate to not suffer with any big side effects from the medication, as I know some other people have struggled. I had a few small headaches and a little bit of acne at the beginning but thankfully it soon cleared up. I have regular dermatology appointments for them to see how it’s going and document my progress. I also need to have regular blood tests done to make sure everything is all okay, and so far so good!

The hardest past for me was learning to accept different versions of myself. I had to accept me bald, accept me in wigs, no wigs, then with my new appearance with no eyelashes and eyebrows, I had to learn different make up techniques. When my hair started growing back, it was great, but I then had to accept a whole different version of myself again as my hair came back pure white! I have dyed it since and I am finally starting to feel like myself again. I've also found it hard not getting an answer to the questions "Why did my hair fall out? Why me? Will it happen again?" All the unknowns are difficult to live with.

I am so, so grateful to the NHS in my area for prescribing this medication for me. I know not everyone is as fortunate as it isn’t available in every NHS Trust and an unfair ‘postcode lottery’ situation now exists. This makes me so angry for other people who might benefit from it like me but can’t access it. I know this treatment does not work for everyone who tries it but, for me, this treatment has been a life-changing medication and I am finally starting to feel like myself once again.