My name is Jasmin, also known as “Jazz” and I am a 29 year old woman from Cheshire. I have had severe atopic eczema from birth and was officially diagnosed when I was three weeks old.
Eczema covered over 90% of my body and I would always scream and cry out in pain. I would scratch constantly until my body bled, my mum actually described a time when I was a baby and she had left me asleep in my cot. She heard me crying so she went into my room and found me in my cot covered in blood. She thought I’d been attacked because there was so much blood but in actual fact, I had just scratched my eczema.
People think that eczema is just a bit of dry skin, but it’s so much more than that. My mum used to have to bathe me in oils twice a day before applying various different creams and lotions to my entire body and wrapping me head to toe in wet bandages. When the bandages needed changing, she would have to hold me down and peel them off my skin where they had become attached due to my body trying to heal the hundreds of open wounds I had. When you get a cut, your body heals it by turning it into a scab but because I was constantly covered in bandages, those bandages became part of the scabs and so when they would be pulled off, it was like ripping off hundreds of scabs all at once. This would happen twice a day. The pain was excruciating but I had to wear the bandages to help prevent infection setting in.
People think that eczema is just a bit of dry skin, but it’s so much more than that.Jazz
Infections were something I was used to, having basically been a walking, talking open wound from the time I was born. I would always be in and out of hospital or the GP surgery with staphylococcus aureus infections, kidney infections, fevers etc. I felt like I lived off the disgusting yellow antibiotic medicine they prescribe for them.
Despite constantly being in pain, covered in bleeding cuts and wrapped in bandages, my childhood wasn’t as bad as my teenage years. At that age you’re already worried about not fitting in, but then add to that a bright red face covered in dry skin with cracked, bloody eyelids and I never really had a chance. My eczema destroyed my self-confidence and body image. It impacted upon my exam results as I would miss school due to infections or be unable to concentrate in class because my uniform was stuck to the cuts on my skin and would pull off the scabs every time I moved.
I wanted nothing more than to cover my face in the thickest make-up possible but it just made my dry skin much more obvious, and burned like salt in a wound. I never wanted to leave the house because I knew people would just stare at my eczema so I became a bit of a recluse and had huge social anxiety.
My life revolved around creams, baths, oils, bandages and antibiotics from birth until my early twenties, when my dermatologist decided to try me with alternative treatments. First I tried UV light therapy. I had to take time off work every week to attend the therapy and it left me feeling like I’d been sunburned, so after three sessions my dermatologist decided to stop the treatment. Then I tried immunosuppressants. I was really hopeful that these drugs would change my life and I underwent chest x-rays and weekly blood tests to make sure my body was healthy enough for the treatments. Unfortunately, ciclosporin had no effect on my eczema, and azathioprine and methotrexate, whilst improving my eczema drastically, gave me severe side effects that meant I couldn’t continue treatment.
At this point my dermatologist said she’d heard of a new treatment called dupilumab and that she thought it might be a good treatment option for me since I’d exhausted all others in my 23 years of life. However, the treatment was still in the very early stages of being rolled out onto the NHS, and my dermatologist needed to put together an application for funding of the treatment. Thankfully the NHS agreed to fund my treatment on a trial basis pending successful results, and after only three weeks of treatment my eczema was 90% clear.
I’d gone from being in constant pain, not sleeping, having to change my bed sheets every day and applying huge amounts of topical creams to my skin, to having clear skin, being completely pain free and not having to use anything on my skin except a daily facial moisturiser. I was no longer ashamed of my face and slowly my self-confidence started to build.
I have now been on dupilumab for around three years and it has honestly changed my life. I am able to run around with my son and not worry about how sweat might flare up my eczema. I am able to wear make-up and perfume without being in pain, and most importantly I am able to enjoy my life.