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Being a teen with a skin condition was a horrendous experience

I was diagnosed with psoriasis when I was 11 years old. My psoriasis appeared as a result of the stress that I experienced following my parents break up. I had it all over my body, in my hair, all over my face and it covered the trunk of my body. It was an extremely depressing and distressing time in my life. First of all, it started as a small dot on my arm which I assumed would go away.

I'd always had really healthy clear skin and was a keen swimmer. I swam for a local team and competed in galas. Having psoriasis put a complete stop to my swimming, all sports and any social activities for that matter. After visiting the doctor, I tried steroid creams such as eumovate, betnovate and aqueous creams. My mum took me back and forth to the GP who tried to treat me, without referring me to a specialist. I got an infection in my scalp psoriasis, which again the GP treated with antibiotics. I was allergic to erythromycin therefore needed up in the emergency, at hospital. When the nurses saw how terrible my psoriasis was, they consulted a doctor who decided to keep me in for my skin, as well as the allergic reaction and so I was transferred to a Dermatology ward. This was the only time and only reason I got help.

The dermatologist I saw diagnosed chronic, acute guttate psoriasis and described it as catastrophic, and he advised that it would not be cured. He was right. I spent one month in the hospital, in bandages and tubi grip. Each day, nurses would apply dithranol and talc, aqueous and coal tar, Oilatum baths, Cocois scalp ointment. The dithranol left dark purple marks all over my body which, to me as a teen, were just as embarrassing as the psoriasis itself. It was awful, but each time I was admitted to hospital I was relieved that someone else was taking over the topical treatment and I could be away from school, avoiding any comments and jokes.

Being a teen with a skin condition was a horrendous experience and I had to continuously reassure people that I was not contagious, or explain my skin to them. I was lucky to have had some understanding relationships at this time in my life but I believe more awareness is needed in this age group, even today. The hospital admissions went on for years, I missed so much school and even attended school in two different hospitals. Even now, hospitals feel like home to me. Thankfully I met some amazing nurses and patients who I will always be grateful to for helping me through. After failing topical treatment, I progressed onto UV treatment. Cream was applied and short exposures to a sunbed in the hospital. This did not work for me either. At 16, I was prescribed Methotrexate, which made me extremely unwell, nauseous and sick. At 17, I was given Etanercept injections but they did not work for my skin. I then tried Ciclosporin tablets, but again they did not work.

Finally, at 18 years old I was given the immunosuppressant biologic drug Infliximab via intravenous infusions, 400mg every 6 weeks. I am told this is a high dose for someone of my size. Infliximab worked for me and for the first time in my life, I was clear of psoriasis. Since then, I have been able to wear dresses and shorts, go swimming with confidence and not worry about covering psoriasis. I stayed on this drug from the age of 18 to 31 until I fell pregnant and switched over to certrolizumab injections, as they do not pass the placenta. Certrolizumab has worked for me too. It has not been an easy journey. I struggle with my health due to the drugs I take and I am constantly unwell with infections that I struggle to fight off. I have had lots of time off work due to chest infections, or flu. If a colleague comes to work unwell, I always get ill and take at least three weeks to fight off something like the common cold. I am prone to lots of illnesses now and I frequently suffer with conjunctivitis, blepharitis and oral thrush because my immune system is so weak. This really affects my mental health, because I so want to be well, making a success of my life, enjoying work and my personal life. Unfortunately, due to my treatment, there is always a hurdle to climb first. I have had operations which have caused me to be re-hospitalised, as I did not heal afterwards due to infliximab.

I've had cellulitis from a mosquito bite, as my immune system does not work to heal me in the way it did before I was taking immunosuppressant drugs. If I get a cut on my finger, for example, it becomes infected almost every time and takes a really long time to get better. These illnesses have had a major impact on my career, and have caused huge problems for me in every job. I am a teacher and so being ill is especially difficult in my role. I wish I'd have know the impact that the drugs were going to have on my health as they often do not feel worth the benefit of having clear skin.

At 18 I started to suffer with joint pains, struggling to walk and I now find that if I do not have my treatment, I struggle to walk and dress myself. I am an active person, I like hiking and travelling and this is one of the hardest parts of having psoriatic arthritis. I am grateful that my biologics treat both my skin and joints. I have of course accepted my issues at this point in my life and I do my best to carry on with day-to-day life, without someday even thinking of my illnesses. The most difficult thing for me in all of this is the way that employers perceive my illness. Many people assume that it is just a skin condition and are ignorant of the fact that the treatment I receive causes illness in itself due to the low immune system. One work place provided antibac wipes and hand gel to everyone in the office, which really supported me in staying well and preventing the spread of germs. Other workplaces did not recognise my condition and made it very difficult for me to receive my infusion. I remember that one employer insisted that I take the work phone to my appointment and make calls with one hand, whilst my other arm is connected to the drip.

Having chronic psoriasis and being on the drugs I take, made the decision to have a baby very difficult for me and despite my baby arriving very healthy, he was unable to have his vaccines on time due to me taking certolizumab and infliximab during the pregnancy.

As well as this, it made breastfeeding a worry as it is known that very small amounts pass to the baby in the milk. Treating psoriasis and psoriatic arthritis has been a long and complex journey. I hope to raise awareness of the types of drugs that are out there as I was left to struggle for a long time using topical treatments that made me miserable. In the last year, I moved from the UK to Sweden and so I am now navigating a whole new health system but thankfully I am still able to take my injections.

I’d be happy to talk to anyone who has questions about my journey, and would like to help anyone I possibly can who is suffering or unsure about how to start their journey to getting their condition under control. 

Submitted on 6th August 2021 by a 32-year-old female living outside the UK

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