I take 96 pills a week to manage my autoimmune condition

Hannah Millington
·Health & Wellness Reporter
Updated ·10-min read

One winter’s day, music teacher Claire Leathem, 44, from Bangor, suddenly found her fingers weren’t working properly. It led to her being diagnosed with a rare autoimmune condition called Scleroderma. Here’s how it changed her life and looks…

Claire takes 96 pills a week, including medication and vitamins, to treat her autoimmune condition (pictured with her weekly dose). (Supplied)
Claire takes 96 pills a week, including medication and vitamins, to treat her autoimmune condition (pictured with her weekly dose). (Supplied)

It all started one day in winter 2019 when I was getting the train to work. My hands felt freezing cold and extremely tight. It was as if I had cling film being pulled all over my skin. It was so strange, I couldn’t move my hands properly. My fingers felt too cold and stiff to get my wallet out to pay for the train tickets. Then when I got to school, I couldn’t press the buzzer to get in.

Other times, I'd get really hot when walking, strip off all my layers, then within an hour have to put them all back on again. I also noticed an odd feeling when cutting slices of bread for the kids' sandwiches and trying to write in their notebooks. The skin of my knuckles would split and get really sore because I couldn’t bend my fingers properly.

When I went to get my rings expanded to fit the new size of my fingers, the jewellers told me the extra width I needed wasn't normal and I should see a doctor.

My appointment was in August 2020 – the long, hot COVID summer – and I was wearing flip-flops. Both my hands and feet looked blue. The doctor asked if I could put my hands together and open my mouth wide, which I couldn’t. I thought my fingers were just puffy, but they were starting to curl. The skin was also getting tight and thickening.

I knew about Raynaud's syndrome from my mum having it and talking about her cold hands, but I was told that my symptoms were a sign of something even more serious, scleroderma. I'd never heard of it.

I thought my fingers were just puffy, but they were starting to curl, the skin was getting tight and it was thickening.

When the doctor said, "It’s okay, we can get you counselling to help you through," I thought, 'Why would I need counselling?'

I was so scared. My blood tests finally came back in December confirming I had a condition called 'diffuse systemic sclerosis', a rapid skin thickening and tightening, and a loss of elasticity and flexibility, affecting both my hands and face. My skin felt like an old, worn-out elastic band.

I made the mistake of Googling it, but that made me feel terrified that I might only have 10 years to live, that my lungs were going to fail and I was going to end up with skin so tight I’d feel like a statue.

It all happened so quickly and my face changed, too. I don't look how I used to, which makes me feel strange, especially when I compare myself now to old photos.

My nose has changed because the skin has shrunk into the cartilage in the bone, and my mouth has got smaller and cheeks bigger. It's like I’m looking at a different person in the mirror.

Claire Leathem (pictured left before her diagnosis) and right, afterwards, feels her face has changed due to her condition, with fuller cheeks, drier skin and a differently shaped nose. (Supplied)
Claire Leathem (pictured left before her diagnosis) and right, afterwards, feels her face has changed due to her condition, with fuller cheeks, drier skin and a differently shaped nose. (Supplied)

My condition makes everyday tasks difficult. For example, when I drink a cup of tea, I start to dribble. Brushing my teeth, keeping my mouth closed to eat and holding small objects without dropping them have all become difficult.

Scleroderma, which is an autoimmune condition, makes me feel exhausted too, and gives me joint pain and digestive issues. I have to be careful what I eat as I can have bad reactions to things, which is hard because I love my food.

My condition makes everyday tasks difficult. For example, when I drink a cup of tea, I start to dribble.

My consultant has to keep a close eye on my liver, kidney, heart and lungs. I now have annual screenings of my heart and lungs to ensure the collagen overproduction from my scleroderma (that affects the organs, including my skin) hasn’t gone internal, potentially causing inflammation or scarring.

My Raynaud's syndrome also turns my fingers and feet blue. Nearly every day, I lose sensation in them and when the feeling comes back again, they’re quite sore. They also go red and puffy.

Claire's hands turn grey-blue during an attack of Raynaud's syndrome, a secondary condition she suffers from. (Supplied)
Claire's hands turn grey-blue during an attack of Raynaud's syndrome, a secondary condition she suffers from. (Supplied)

These symptoms are just about controlled with medication at the moment, but if the temperature is lower than 14-20 degrees or if it’s windy or particularly hot, my Raynaud’s symptoms flare up. Whenever I’m stressed, it makes things worse too.

Almost everyone with scleroderma has Raynaud's too, as a secondary condition, but weirdly there's only a small chance of someone with Raynaud's getting scleroderma.

My lowest point was during a church performance, one morning back in 2021, when I suddenly found I was struggling to play the flute because the skin around my mouth was so tight. I messed up the whole piece, it was horrible.

I tried a few more times and in 2022 I decided I wouldn't perform live again for a while. I also had to give up teaching advanced grades in flute and I struggled to play the piano in classes. I used to play in a folk band, but when Covid rules lifted and we were getting enquiries again in 2021, I had to say I couldn’t play.

My lowest point was during a performance in 2021 when I suddenly found I was struggling to play the flute, because the skin around my mouth was so tight.

Thankfully, now I’ve found a way to make playing the flute easier by using a special curved head joint that attaches. I can blow directly into this mouthpiece, rather than across as you typically would, which allows me to angle my flute better.

We've got our first gig again soon. Last week during rehearsal I said, "I thought this was never going to happen. I can't believe I’ll get the chance to play in public again."

My music teaching is going well again now too and my energy levels have improved. I think the music, including playing the flute, singing with kids and doing breathing exercises, has really helped my lungs. The vast majority of people with my condition have problems with their lungs, but I don't at all.

Claire, with her husband Stuart and children over the summer. (Supplied)
Claire, with her husband Stuart and children over the summer. (Supplied)

Looking back, I was lucky my rheumatologist diagnosed me quickly. I’ve been on the maximum dose of an immunosuppressant drug called Mycophenolate for the past three years. It’s been brilliant. My skin and chest feel much looser and more comfortable. The collagen production around my chest had become so bad, it felt tight and hard to breathe.

My daughter saw me making up my medicine boxes the other day and asked how many tablets I take. I didn't know, so I counted them and was shocked to discover I take 96 a week – roughly 14 a day. That includes meds for my stomach issues and vitamins like vitamin D and magnesium, but they all definitely help.

My daughter saw me making up my medicine boxes the other day and asked how many tablets I take. I didn't know, so I counted them as 96 a week.

In winter, I use hand creams to keep my hands soft (as the skin splits on my knuckles easily). The skin on my face has been helped by a procedure called fat stem cell transfer, which I underwent at London’s Royal Free Hospital in January this year. They took fat from my tummy and injected it around my mouth (which helped with my skin’s movement there). This is still a relatively new procedure but it's really helped me.

I also think a personalised diet has made a big difference, guided by my bio-kinesiologist friend. For me, avoiding sugar, giving up milk and dairy products, and baking my own bread has helped reduce the inflammation in my body and given me more energy. Reducing stress has also helped with my pain threshold.

It can be frustrating having this serious condition that nobody's heard of. I always appreciate it when people take the time to look it up. And because I have strong nails, less wrinkles and naturally tanned skin (because of my condition) strangely I can look quite healthy!

While I might get comments like, "You don't look 44," I know I'm actually having a flare when I start to have a tan on my face.

I have to keep my teeth extra clean to reduce the risk of losing them due to soft tissue loss.

I have to keep my teeth extra clean to reduce the risk of losing them due to soft tissue loss. I also have to keep my hands warm to reduce the risk of losing my fingers or part of them due to ulcerations caused by inadequate blood flow.

Seeing how I look now can at times be upsetting. I don’t like getting my photo taken as I can’t smile properly. It also still hurts at times to eat and drink, and the impact of having a small mouth is tiring.

Following my mouth surgery, my last attempt to play flute in church was in March this year, but I’m still getting used to a new way of playing before trying it in public again.

Claire, with husband Stuart, often wears gloves even in summer to protect her hands, due to her Raynaud's syndrome. (Supplied)
Claire, pictured with husband Stuart, often wears gloves even in summer to protect her hands, due to her Raynaud's syndrome. (Supplied)

My husband Stuart has been brilliant. He's very supportive and always aware of potential flare-ups. If it's been a cold, windy day, he'll know to have my wax pot waiting warm at home for me. I dip my hands in, which is very soothing. He's also very quick to do the dishes, which I find hard, especially as I wear gloves nearly 24/7 to protect my hands.

I've learnt to be kinder to myself, take breaks, say no and prioritise my own needs. Before my diagnosis, I was a perfectionist.

I've learnt to be kinder to myself, take breaks, say no and prioritise my own needs. Before, I was a perfectionist, trying to do everything. I like being a co-leader in my support group, attending appointments with others, and it’s nice to help make a small difference to their lives.

I feel fairly positive about the future and would recommend anyone else in my position join a support group. Both my conditions can be very isolating. People can have very bad days even after 10-15 years, so having a community who understand really helps.

For support, information or to make a donation, visit Scleroderma & Raynaud's UK (SRUK).

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