Patient Stories
New therapies for atopic dermatitis (atopic eczema) have transformed the lives of both children and adults as well as their families. This part of our website is for sharing your stories to inspire others to seek new treatments and improve their lives. If you wish, you could send us a piece of artwork (picture, poem, video, song or anything else you can think of) that you have created which expresses how you felt before your treatment and afterwards. Your stories and artwork can be anonymous or you can reveal your identity. What is important is your experience of atopic dermatitis, before, during and after treatment and how it changed your life for the better.
The patient stories displayed here are exclusively for use on this SDR website. Requests to display these stories on other educational websites can be discussed with the patients.
Please email your stories and pictures to both m.j.cork@sheffield.ac.uk and l.hunter@sheffield.ac.uk
Clinical trials of new treatments for atopic dermatitis allow children and adults to access these treatments up to six years before they are available through the NHS. For those who cannot access a place in a clinical trial, we work with our colleagues in the Pharmaceutical industry to help bring these treatments on a compassionate basis to those in need.
Freddy’s Story
Before Dupilumab: Freddy in March 2017
Freddy suffered with his skin from about 4 weeks old.
Being a single parent 99% of the time, it was down to me to fight to get the help Freddy needed.
To start with he was prescribed the usual steroid creams and emollients which his skin never really appreciated.
Freddy's Grandpa is a farmer and he suggested trying udder cream – what they use on the cows. This gave a short/brief bit of relief for Freddy but didn't last for long. I tried everything I could think of but felt like I kept hitting a brick wall.
His doctor first referred him to the local hospital. They suggested putting him on an immunosuppressant drug. He was only five at the time, I didn't know what the side effects would be and I didn't feel comfortable doing this to my baby boy. So I decided to change GP surgeries.
What a refreshing change, his own doctor suffered from a similar skin condition, he knew just how much Freddy was suffering. Him and his nurse practitioner suggested getting Freddy on the Dupilumab trial at Sheffield Children’s Hospital, they spoke very highly of the hospital, which put my mind at ease... a lot.
When Freddy's skin was at its worse, we had to change his bedding every day, due to the amount of blood on them, from him scratching. I often used to cry, thinking I was failing my son, because of the pain he was in, yet there was nothing I could do. Yet everyday Freddy wore a smile on his face, giving me the strength to keep fighting.
The first photo was taken in March 2017, the second taken in March 2021.
He started the blind trial in 2018 and started the actual Dupilumab drug in 2019. His skin improved so much that if you saw him today you wouldn't believe he had anything wrong with him.
Freddy and I are eternally grateful to Professor Cork and the entire Sheffield Children’s Hospital team.
My son is now 12 and he's now able to live his life.
This drug has changed his life.... thank you so much from the bottom of our hearts 💕
Freddy & Vicki
On Dupilumab: Freddy in March 2021
Jaze’s Story
My life before Dupilumab
Monday 1st February 2020
Yesterday I had to come into hospital again I didn't want to my Mum and Dad made me I was very bad. My skin hurt so much I couldn't walk because of a big sore patch on the bottom of my foot and it didn’t feel the same it was like a funny feeling like pins and needles in it. I haven't been sleeping either because I was very itchy and I couldn't stop scratching then it hurt so bad the paracetamol doesn’t work the pain is that bad I can’t get in the bath or have anything touch me it stings like worse pain ever. I was still awake at 5am and I had to sleep with my mum she tried to hold my hands to stop me cutting myself. Yesterday I was fed up of living like this as I’m just getting worse everytime so I didn't eat any food or drink anything and when it was time for my medications I would not have them, my Mum and Dad tried to force me but I spit them out. I was very angry I said things like swear words and blamed my family and doctors for not getting me better. I said I wanted to die because it feels so bad that’s why I wouldn't eat or drink or have my medicines so I would die quicker. My sister got upset because I said this. This made me mad and I hurt her, my Mum and Dad tried to stop me so I hurt them too. I am fed up of blood all over my clothes and bed it’s disgusting and sticky and then I have to pick and scratch the scabs because it feels so nice, it feels even better when it bleeds sometimes I hide so I can scratch and no one can tell me to stop.
ps. I had to type this because I can't write my hands hurt too much.
By Jaze :(
My first Dupilumab injection
My life after Dupilumab
“11 years of suffering and 11 weeks of new treatment... people have noticed me first not my eczema”
Charlotte’s Story
Last year (2020) was a tough year for everyone, but even harder when your daughter has eczema which was progressively getting worse. Charlotte's had eczema ever since she was a baby but last year things took a turn for the worse. Charlotte was wrapped up in bandages at school, hated getting dressed for P.E and said one day that another child told her they didn’t want to be friends with her because she was ‘too itchy’. Children with health conditions have an incredible amount of resilience but things were getting to us all as a family, she would scream in the bath, bedding was changed daily and dead skin and blood stained her clothes. One day, after helping Charlotte get dressed (her skin looked burnt on 70% of her body), she cried ‘I want to be like you, Daddy and Olivia, I want to have new skin!’. That was the turning point…
Pre-Dupilumab
I contacted every doctor she was under. Fortunately, we found a specialist and paid to see them, praying that someone could help. This doctor knew exactly who we needed to see, ‘Professor Cork and the Sheffield Children’s Hospital Dermatology Team! We started the Dupilumab drug in late February 2021. After the first injection Charlotte’s skin started to improve. Charlotte has stopped covering herself up with cardigans and tights and can’t wait go swimming again. She’s has a newfound confidence, if not a little more cheeky! We are eternally grateful to the entire Sheffield Children’s Hospital Dermatology Team for the opportunity for Charlotte to have access to Dupilumab. We hope others like Charlotte will have this opportunity too. THANK YOU so much from us all :)
Post-Dupilumab
It’s Only Eczema!
National Eczema Society member, Sarah Celestine (aged 49), the first person in the UK to gain compassionate use of dupilumab, shares her life-changing experience of the new biologic drug.