By Nicholas Schräder

My name is Nicholas Schräder and I’m a PhD researcher and medical doctor at the UMCG Centre of Expertise for Epidermolysis Bullosa (EB), in the Netherlands.

 

Which aspect of EB are you most interested in?

Central to my work is the experience and treatment of pain. This is relevant for people living with any type of EB as, no matter what the genetic cause, people living with EB experience pain as a result.

 

What difference will your work make to people living with EB ?

I have always taken to heart the life stories and experiences of EB patients. They each have their own unique journey, but pain is always a feature. At the centre of many of these stories are the day-to-day challenges that patients, their families, and even many caregivers face, particularly when dealing with the pain of EB wounds. I find that my work naturally turns towards trying to understand these challenges of which the burden and consequences of symptoms in day-to-day life is significant. As a physician first and researcher second, I am focused on connecting with patients, learning from them, and then systematically looking at new ways of approaching or managing their symptoms in a feasible manner. A specific aim of my research is finding more effective treatments for pain to improve the day-to-day life of families affected by EB.

As I am in training to become a general practitioner, next year I hope to continue working on EB and addressing many issues encountered in the primary care setting which are often overlooked.

 

Who/what inspired you to work on EB?

I grew up in Hong Kong where EB is quite unknown and often even considered taboo. I was inspired by a plastic and reconstructive surgeon who oversaw the care for all EB patients in Hong Kong. After moving to the Netherlands, I was welcomed with open arms to join the EB team in Groningen. Prof Marcel Jonkman (former clinical lead) and José Duipmans (nurse practitioner) provided a fantastic learning environment. I am still in close touch with some of the first patients I met in Hong Kong and the Netherlands, who to this day constantly motivate me to continue my work with EB.

In the words of one of them..."you can never have too much research on improving the day-to-day challenges in EB.”

 

What does the funding from DEBRA UK mean to you?

I have had a particular interest in working in a cost-efficient manner, with a close-knit team, and directly with patients. The funding by DEBRA UK has allowed my team to explore a research avenue that was inspired by… you guessed it, patients! The field of cannabinoid-based medicines is becoming more and more relevant in skin conditions, including EB, and we started our work with zero scientific evidence but many recommendations from patients. By funding this work DEBRA UK has broken the taboo and laid an important cornerstone for future research in this field. As of now, EB researchers on three continents have started projects in this field!

 

What does a day in your life as an EB researcher look like?

Like many other research doctors, my days vary, but my pillar is a morning run followed by a strong Dutch coffee! My research spans from the laboratory bench to the bedside. I often find myself quietly working in a dark room, peering through the microscope  at tiny samples of skin fixed to glass slides and treated so that specific proteins glow. I will then analyse the results from these immuno-fluorescent skin slides over another coffee with the EB lab technicians. Another project of mine is a clinical trial, comparing a cannabinoid-based oil with placebo oil. The people taking part in this trial are adults living with EB and I typically meet them at our outpatient department. We discuss the outcomes and ensure that those taking part understand what they are  agreeing to, then begin gathering data using questionnaires. When these are complete, we make our way to the MRI scanner on the other side of the hospital where the participant has to lie very still (without falling asleep!) for 20 minutes during the scan. The MRI scanner uses strong magnets and radio waves to create images of a person’s brain and can detect changes due to pain. The scan itself is painless and safe, but some people can feel claustrophobic inside the scanner and the machine can be quite noisy. Some people cannot have MRI scans if they have any metal inside their body that could be affected by the magnets, but they may still be able to take part in our clinical trial.

In the afternoon, I plan my research meetings or presentations/lectures. There is a lot that goes on behind the scenes when doing research. A big part of this is networking and brainstorming ideas with EB colleagues around the world. It is a pat on the back, and evidence you’re on the right track if others in the field see the value in your work or would like to contribute to what you’re doing. Over the course of my time as a researcher I have found that finding a balance in work priorities and collaborating with colleagues who have more expertise than I do in a particular field makes the outcomes much more meaningful.

 

Who’s on your team and what do they do to support your research?

At our EB centre the team is roughly divided into three parts: clinical (doctors and nurses who work directly to treat patients), research (those involved in collecting and analysing outcomes of treatments to provide evidence for what works best), and support (paperwork, appointment bookings and other administrative or technical tasks that are vital to keep the team running smoothly). All of these colleagues have contributed or supported my work both directly and indirectly. At the core of my team are the Principal Investigators (PIs) for my projects: Prof André Wolff (clinical lead of the Anesthesiology Pain Centre) and Dr Marieke Bolling (clinical lead of the Expertise Centre of EB). Prof Wolff has only recently joined EB research, but is a renowned clinician and researcher when it comes to pain medicine and the way the brain processes pain signals – a fresh pair of eyes from an “outsider” goes a long way! Dr Bolling knows EB inside and out, and has a huge knowledge base. They both keep me in line and are a pleasure to work with. Another important member of the team is our nurse specialist in blister diseases, José Duipmans, who has more than 30 years’ experience as the primary point of contact for all patients in the Netherlands. When doing research, having someone like her turns a complex logistical process into a simple one.

 

How do you relax when you’re not working on EB?

I must admit that work can also be relaxing and is a joy to do, but outside of the hospital I’m a keen sportsman. I tend to go for trail runs several times a week. Last year I ran two marathons to raise money for DEBRA Netherlands. I’m a tennis player, but recently moved into the world of “Padel” tennis. I have two lovely, big dogs that don’t let me sit still at home. Lastly, I love going on adventures and am lucky enough to be both a doctor and explorer when joining expedition teams in the mountains.

 

What these words mean:

Anaesthesiology = medical specialty encompassing the care of patients before, during and after surgery including treatment of pain

Immuno-fluorescence = using antibodies to make specific proteins glow when studied under the microscope

Reconstructive surgery = surgery to improve the working of the skin, as compared to cosmetic surgery which is focused on changing its appearance

PhD = a research qualification, usually taking at least three years, that trains laboratory scientists and medical doctors in how to think about and carry out research effectively (Doctor of Philosophy)

Cannabinoid = molecules found in cannabis plants

MRI = magnetic resonance imaging. A safe and painless way of looking inside the body using magnets and radio waves.

An explanation of MRI:

 

Full glossary of scientific terms