LGMD Clinic Staff:       Ursula Moore

소속:     John Walton Muscular Dystrophy Research Centre

역할 또는 직위:        Medical Doctor and PhD Candidate

현재 직책에 오르기까지 어떤 교육과 훈련을 받았나요?

I attended medical school at Cambridge university including an intercallated MA. This was followed by junior doctor training in adult and pediatric medicine in Newcastle-Upon-Tyne and Merseyside.

특히 근이영양증 환자 서비스 및 임상 치료 분야에서 경력을 쌓게 된 계기는 무엇인가요?

I joined the John Walton Centre in my early years as a newly qualified doctor before leaving to complete more training and then returning to the team. I wanted to be part of research which could make a real difference to people’s lives and feel that there is so much potential in muscular dystrophy to make advances which really will help people to live more easily and more comfortably.

진료소 지원 또는 환자 치료에서 가장 많이 관여하는 분야는 무엇인가요?

I see patients for their outpatient review as part of their clinical care, along with a wonderful team of physiotherapists and specialist nurses. I enjoy getting to know our patients and thinking of strategies to help them, based on their condition and lifestyle. I am also involved in clinical trial work – seeing patients who are taking part in trials of new medications or other treatments.

I am currently doing a PhD working with patients with Dysferlinopathy, trying to determine what makes some people get worse so much more quickly than others. This is part of a large study called the clinical outcome study in Dysferlinopathy.

여러분의 업무는 환자들에게 어떤 도움을 주나요? LGMD 환자 관리의 미래에 대해 가장 열정적이고 흥미를 느끼는 것은 무엇인가요?

My day-to-day clinic work helps patients in terms of reaching a diagnosis and then providing an understanding and explanation of the many symptoms that patients experience – and helping to navigate a way through these problems.

I hope that my PhD research will allow clinicians to be able to predict what will happen for an individual patient with dysferlinopathy so that as new treatments are developed, they can be approved more quickly and reach the patients who will really benefit from them.

I am also working on a project looking at women’s experiences of pregnancy in LGMD and hope that this will allow doctors to understand more about what women with LGMD go through when they are pregnant and provide better advice to women who are hoping to become pregnant in the future.

LGMD 환자에게 서비스를 제공하는 NMD 클리닉에 대해 환자 및 LGMD에 관심이 있는 사람들이 알았으면 하는 것은 무엇인가요?

NMD clinics that see LGMD patients are an opportunity to see doctors, physiotherapists and specialist nurses who are experts in LGMD and have seen a lot of patients with different LGMDs. This means that they can often provide specialist expertise in reaching a diagnosis or suggesting ways to manage symptoms or improve a patients quality of life.

These clinics are often also linked to a lot of research activity, so that if clinical trials of new treatments are started then the NMD clinics will often find out early and may become a centre for recruiting to a clinical trail.

이 분야에서 계속 일하게 된 동기는 무엇인가요?

I am very fortunate to work with a passionate group of clinicians and support staff who allow me to follow my ideas and perform good research. However, it is the patients who provide the most inspiration – I am continually amazed at the resilience and positivity of many of the LGMD patients that we see, despite major difficulties and to be able to help improve their situation in some way is the perfect motivation.

What is one unique fact about you that many other people do not know?

I love to ski both downhill and uphill and have been the British ski mountaineering champion for the last 3 years.

환자들이 어떻게 여러분을 격려하고 업무를 도울 수 있나요?

Patients can be involved in every step of LGMD research. Of course, we need patients to take part in studies and answer questionnaires or consider if they would want to do so. However, I also like to involve patients from the beginning and am interested in suggestions of research areas that patients think are important – for example, my pregnancy research started from patients in clinic having questions that I could not answer. My research has been reviewed by patients before it is started or before questionnaires are sent out to make sure they are not full of Jargon and cover the areas important to patients. This sort of review is crucial to have relevant research that will benefit patients quality of life and if patients are interested then joining charities as a patient representative, or telling your clinician that you would be happy to help, can be a great way to inform the new research.