Posted on Wednesday 31 July 2019
Dr Helen Alexander, who is a Clinical Research Fellow, with Professor Carsten Flohr, Clinical Lead of the Severe Paediatric Eczema Clinic in the new Rare Diseases Centre of Guy’s and St Thomas’, behind severe eczema patient Theo.
A teenager who suffered severe eczema for three years and was regularly bed-bound has had an ‘unbelievable’ recovery following treatment with a new type of drug.
Theodore Walker, aged 17 from Suffolk, was in constant pain and ‘unbearably itchy’ but after four weeks of treatment is now eczema-free.
He is one of the first to receive a new drug in the UK at the Severe Paediatric Eczema Clinic at St John’s Institute of Dermatology, which is based in the new Rare Diseases Centre of Guy’s and St Thomas’.
Theo’s condition was so harsh that he was bed-bound, forced to take regular showers for temporary relief and it adversely affected his A-level studies. Theo said: “On quite a few days I couldn’t do anything at all. I couldn’t go outside and do normal teenage activities. I wasn’t living a life.
“It makes you feel really self-conscious when you do go out to do anything, you feel like everyone is looking at you and it can also be quite depressing. It was unbearably itchy and you can’t concentrate or focus on anything because of that. It really interfered with my schoolwork. Quite often there wasn’t much I could do.”
Theo’s treatment is through a new medication called Dupilumab, which targets a brace of cells - interleukin-4 and interleukin-13 - under the skin that produce inflammatory chemicals that cause eczema. The drug is a much more targeted and specific pathway than the commonly used immuno-suppressants which can trigger unwanted side effects.
Theo added: “It has been amazing, everyone here has been great and the injection itself has been life-changing. People say that the summer after A-levels is meant to be one of the best times of your life so I’m really looking forward to going out with friends, going out on holidays and not having to worry about my skin at all.”
Theo’s mother Rebecca describes Theo as a new person. She said: “The change is huge. Before life was not good and it was difficult for everybody. He’s got his life back and it’s fantastic.”
“We’re still trying to get our heads around the fact that it has worked so quickly. It’s unbelievable.”
In the three year period, Theo’s condition flared up to a point where he could not physically move, coupled with constant skin shedding.
Rebecca said: “He woke up and it was a little bit different from what it had been so we went to the private dermatologist that we had been seeing and he said that for all intents and purposes you should be in hospital.
“He was almost like a burns victim he couldn’t even move in bed because it was so painful and weeping and sore. His whole body was shutting down and trying to preserve itself but we didn’t realise that because you live with it daily.
“The Severe Paediatric Eczema Team is brilliant. The communication is amazing, if you email them or you need any advice they come back quickly with answers.”
Professor Carsten Flohr, Clinical Lead of the Severe Paediatric Eczema Clinic at St John’s Institute of Dermatology, said Theo’s condition prior to coming to the clinic was ‘horrendous’, and his eczema did not respond adequately to conventional immuno-suppressive treatment. Professor Flohr said: “He had no quality of life. The main issue that people with severe eczema have is that they can never sleep because of the intense itching. The itching causes a lot of scratching and the scratching very often introduces skin infections and that can lead patients into hospital for intravenous antibiotic treatment.
“That is day in, day out and they are half asleep and half-awake throughout the day and the night. The effect on Theo has been dramatic. His itching has almost stopped. For the first time in his life he has had a proper sleep.”
Theo is able to self-medicate in a similar way people with diabetes inject themselves with insulin.
Professor Flohr said: “We are fortunate to have this Severe Paediatric Eczema Clinic. It’s a unique service nationally – it was only set up for children who are as severe as Theo, where other dermatologists are struggling using the conventional treatments.
“We have a Clinical Psychologist who supports us because many of our clients have got anxiety and depression or other psychological issues.”
Theo gained access to the medication through the Early Access Medicines Scheme supported by the Medicines and Healthcare Products Regulatory Agency and funded by Sanofi the manufacturer of Dupilumab.
The medication has been approved by the National Institute for Health and Care Excellence, giving the NHS access to the medication for those who have failed to respond to conventional treatment.