In April 2014, Lisa Jamieson developed a spontaneous cerebrospinal fluid leak that left her bedbound for months, resulting in her dropping out of her studies temporarily. Lisa was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS), a connective tissue disorder. With her pharmaceutical background and knowledge gleaned from her MSc in Nutritional Medicine, Lisa experimented with her diet and discovered first-hand the role that nutrition and lifestyle play in the management of her condition.
Now on the cusp of ground-breaking research, Lisa is working towards a clinical research study into the benefits of nutrition on hEDS.
The Surrey Alumni team spoke with Lisa to find out how she overcame her illness and used it as a spring-board for her pioneering research.
What initially attracted you to Surrey?
The main thing was the course. When I first decided to study nutrition, the MSc in Nutritional Medicine at Surrey happened to be one of the first courses I came across. When it said it was aimed at doctors, pharmacists and dietitians, I knew it was for me! I had previously trained as a pharmacist, having done an undergraduate pharmacy degree and an MSc in Clinical Pharmacy, so I had the basic level of healthcare knowledge and experience that the MSc could build on. Looking at the content of the course, I was really impressed with the scope and variety of the different modules that were available. In addition, living locally meant the University was right on my doorstep, so it was a really easy decision to study at Surrey.
Did the course live up to your expectations?
Yes, absolutely! I enjoyed every part of it. I already had an interest in food and nutrition; prevention and lifestyle, but the course took it to another level. In fact, it changed everything in terms of how I view how the human body works. I had previously been taught to manage illness through medicines, but the MSc changed my whole perspective on how healthcare is delivered. Looking at it through a completely different lens, I see now how prevention, diet and lifestyle have the potential to revolutionise the way we manage patients and their health. I understand the importance of managing my condition through nutrition more than with medicines. Drugs are important but health is affected by lifestyle.
When did you first witness the benefits of nutrition?
My own personal experience has been the most significant for me. When I was doing my MSc in Nutritional Medicine, I became really unwell partway through and had to pull out of my studies for a year. The illness that I had led to a diagnosis of the genetic disorder, hypermobile Ehlers-Danlos syndrome. I’d had symptoms related to this condition since I was four years old, but I didn’t realise they were related because it had never been diagnosed. It was just through chance, and by reading to understand why I had become so unwell, that I started to hypothesise whether diet could influence my symptoms.
I decided to experiment with my own diet. I looked systematically at which nutrients might be important; which foods I should avoid or prioritise; whether I should take any supplements. Over a period of about three to six months, all of the symptoms that I’ve experienced since I was a child gradually reduced or subsided. It’s been truly life-changing. I used to need prescription medicines fairly frequently, so to not need anything in years is phenomenal for me. I used to feel mildly unwell on most days and I don’t feel like that anymore; it’s exciting!
I’m not the only one who has benefited from my studies, either. For example, a family member participated in a clinical trial for three different drugs for an eye problem. When she enrolled in the study, she changed her diet based on advice I gave her. The consultant who saw her at the next appointment after the treatment asked what she was doing that differed to all the other patients because they didn’t usually see such a positive response to any of the drugs. . When she said she had changed her diet, he was completely taken aback and wanted to know more! Her condition needed drug management, but her recovery was quicker and more enhanced than other people in the same trial, which seemed to be related to her diet. It was very eye-opening!
How did this affect your studies?
My experience led to me finishing my MSc doing a research project in my condition. Now my research has moved on and it’s part of what I do in my day job. Previously no one was doing research in this field, neither from an Ehlers-Danlos syndrome perspective nor from a nutrition perspective. The professor that I now work with has observed similar experiences in other patients, but there’s never been any systematic approach as to how we might study this in a more scientific way, so that’s what we’re trying to do with our research. There’s still a lot of scepticism in medicine about the scope of the benefit of nutrition, but hopefully our research will help to change that.
What impact do you predict your research will have?
Well, hEDS is talked about as being a rare disorder, but prevalence figures suggest that 3.4% of the population may be affected along a spectrum, which actually means it’s quite common. Because of the spectrum of severity of the symptoms, though, it often goes undiagnosed. I mean, I’ve lived with it for most of my life and only found out about it recently! That in itself is a challenge. To get medicine to wake up and realise there’s a condition that has been hiding in plain sight all this time, that could explain why people have these clusters of musculoskeletal problems, gastrointestinal problems, headaches, migraines, heart rate abnormalities, fainting, dizzy spells, passing out, nausea, etc. Once people realise how many people are affected by the condition, there’ll be more demand for knowledge and that will really help drive the research.
What are the challenges, personally and professionally?
Hearing that my work is already making a difference and is giving people hope is a real motivation to keep going, but it’s not easy. The main challenge is the workload. There’s so much that I want to do but there aren’t enough hours in the day! I work full-time across two jobs and often work evenings and weekends to try and make it work, but because it’s such a passion and because it’s a personal thing, I do it willingly.
What are your top tips for students who are interested in starting their own research?
Don’t just wait for job adverts – Google who works in the field you’re interested in and be confident to approach them. They may say no but they might say yes! I’d never worked in academia before, but I just wrote to people saying I wanted to do research in their field and asked them to collaborate with me. One thing led to another; we put a grant proposal together and I got a job out of it.
Also, make sure you follow up. As long as you persist and are polite, then if they’re interested, it will happen. If you’ve got an idea, go for it. I hear all the time that students have approached academics or companies and asked to work with them and it turns into something. You’ll come across hurdles; it’s part of the process… but don’t let anything stop you!