‘It’s only hair.’
I’ve lost count of how many times people have said this to me over the past 10 months, but until you start balding, you really don’t know how damaging a statement it can be.
My name is Tommy, I am a 30 year old American living in London and I have Alopecia Universalis.
Alopecia Universalis (AU) is the most severe form of Alopecia. It’s the complete or nearly complete loss of hair on the scalp, face, and rest of the body. Alopecia is a disease in which your immune system mistakenly attacks hair follicles, causing hair loss.
There is no cure for this disease, but there are treatments that may encourage regrowth.
Many people have heard of Alopecia through celebrities with the condition such as Gail Porter or Matt Lucas – but in my experience most don’t know what those of us with the condition battle through.
I certainly didn’t at first.
As I took my morning shower at the beginning of November 2021, I noticed a huge amount of hair in my hands. I felt numb, shocked, and extremely confused. Panicking, I called my mum and explained what was happening.
Without second thought, we both assumed it was this new shampoo I used that day, which led to a rabbit hole of googling reviews about the product.
I stopped using it immediately, but my hair kept aggressively falling out even if I didn’t shower. It clearly wasn’t the shampoo and the more I read up on numerous hair loss conditions the more stressed I became. I went to the GP and they told me it was male-patterned baldness. It definitely wasn’t – it wouldn’t have happened so suddenly.
I loved my hair, as most people do. It was light brown and short, and very thick in my early twenties. Of course, it slightly thinned over time and I knew I had a very gradual receding hairline but this was something completely different and unknown to me.
I would wake up with my bed sheets covered in hair, the shower drain clogged, and every few days it looked like I had a fresh haircut. It was awful.
Across the next three weeks 70-80% of my hair disappeared. And I still had no idea why.
I went back to my GP and had test after test. They looked at my iron levels, thyroid function, and white blood cells. Nothing showed as abnormal – my doctors were equally confused as to why or how I was losing this much hair and agreed that it was not male-patterned baldness.
It was now December and I still had no answers. I was struggling, emotionally it was taking its toll, my confidence was shot – I just wanted my hair back.
Everyone could tell it was thinning but no one said anything negative. I was met with positive reassurance that everything was fine and that no one could even notice. That made it worse as it made me feel that no one understood, or that I was overreacting.
Determined to stop thinking about it, I shaved my head on December 6, and wow did it help boost some confidence. I felt so much happier knowing that no more hair was going to fall out, and I actually thought I didn’t look half bad!
Still working closely with my GP, they suggested it may in fact be Alopecia. I naively didn’t believe them, and kept researching to find alternative answers. I even booked a private dermatologist appointment for January and pushed myself to ‘enjoy’ the Christmas period and relax.
But then I started to lose the rest of my body hair. Over the last two weeks in December, my eyebrows, eyelashes, and beard were almost gone. I was finally somewhat OK with a shaved head but here we were once again.
It was getting very difficult to look at myself in the mirror and see a hairless man looking back at me that I did not recognise, and was desperate for help.
Finally, my appointment came and it took 10 minutes for them to confirm it was Alopecia Universalis.
I felt two things at that moment: relief and pain. I finally had a diagnosis and could relax a bit, but I was also hit with the reality of a disease I knew nothing about.
My dermatologist told me that Alopecia can happen to anyone at any given point in time at any age, and of any gender. I was also told that no one understands why this happens and many assume it’s stress induced or environment related.
My private dermatology appointment was meant to be a one off as it was incredibly expensive, but things went from bad to worse when my GP told me Alopecia was unable to be routinely treated by the NHS as it was seen as a cosmetic condition.
I was shocked and upset that the NHS could only do so much and my options were dwindling. I looked into medical insurance and unfortunately was given the same answer.
To this day I still don’t understand how it can be labelled cosmetic. I understood this was not a life threatening illness but I knew I still had a disease that I had no choice in being diagnosed with.
My only option, if I wanted treatment, was to continue with a private dermatologist, which I did.
Treatment came in three courses: Steroids, more Steroids, and finally JAK Inhibitors.
The first round of treatment were steroid tablets, these were meant to help suppress my immune system and block white blood cells from attacking hair follicles; to encourage hair regrowth.
Unfortunately no hair regrew during those four months and by May I was 100% hairless across my entire body. I was not fond of going on another set of steroids considering the first round didn’t do much so I spoke with my dermatologist and we agreed to jump to the third course.
On June 13, the FDA approved a non-steroid treatment known as JAK Inhibitors (Baracitinib) for severe Alopecia, which is the first drug approved for this disease.
However, in the UK the drug is not approved by the NHS to treat Alopecia, so it unfortunately comes with a £1,000 a month fee.
Knowing this was beyond my reach, I researched for an alternative. After three months, I was connected to many others with my condition around the world via social media and through them and further research I was able to find a pharmaceutical company who were able to help.
I was of course concerned about ordering online medication. I had never done this before, but I was desperate for my hair and when you’re driven to find answers you will do what it takes.
I am beyond thrilled to say that there is more hair on my body than I have seen in eight months. Hair is growing rapidly across my scalp, my face, arms and legs. To say I am ecstatic is an understatement, I am elated that things are turning around and it’s just a huge relief that the treatment is working.
By January, I’m hopeful I will have most of my body hair back and can start to consider weaning myself off the medication to avoid potential health risks.
It’s daunting knowing that I may be on this immunosuppressive drug for the rest of my life and if I do come off it, I might run the risk of losing my hair all over again.
This is very much a trial and error situation, but if I have made it this far then I can carry on knowing that I have and will continue to try.
Of course I have learned to love the hairless man staring back at me in the mirror and have come to realise it’s just the same old me but to be honest, I never had a choice.
I have had to embrace this new version of myself; I’ve had to start accepting this disease whether I want to or not. And that has been a very long road.
So back to my opening line, ‘it’s only hair.’ Reader, it is not just hair. My identity, personality, mental health, and physical appearance have shifted dramatically in the past 10 months.
It’s been an experience that has changed me and one that was and is emotionally exhausting. This disease will affect me for the rest of my life and simply put, there is truly not enough support for those with Alopecia.
My main hope is that this story encourages others to push for answers and overall change.
Life isn’t fair sometimes, we know that. At the end of the day I am just one person who randomly started losing their hair, but if I can write this story and share my experience, then maybe the condition can start getting taken more seriously.
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