Year 12 Student at Xaverian College, Ecem Esen from Brooklands, has recently written a contribution to a medical article published by the British Medical Council, as part of the ‘Your Rheum’ group, which aims to raise awareness of rheumatological conditions and the impact these have on the lives of young people.
The group, funded by Versus Arthritis and comprises sufferers aged 13 to 25 years, a professor of rheumatology and a researcher, is an advisory group that speaks to other medical researchers who are researching unrelated conditions but where Rheumatology conditions have had an adverse effect on these.
Ecem was diagnosed with a type of Vasculitis and is one of only 2000 sufferers of this rare condition in the UK. She said: “I was asked to join the group because I suffer from this condition and have experienced both being very ill with it and making a recovery to get back to normal life. I have had a number of spells in hospital for treatment and, over a two-year period during Covid, the medical staff at the hospital were the only people I had contact with.”
Ecem lost all her hair during the treatment and had to learn to walk again because of the impact it had on her muscles. She got to know the staff so well at the hospital that they invited her to join the group and contribute her experiences of living with the condition.
The group periodically takes part in online meetings where they answer questions and pass on their experiences to others, as well as writing the paper that was published in July on the British Medical Council’s website. The whole group played a part in writing the article over two years and, after going through many draft stages with the publisher, the article is now published on the BMA website.
The article was reviewed by the BMC who gave positive and constructive feedback as the article was being written and commented that Ecem’s contribution was invaluable in giving a personal perspective of the condition and the impact it can have on young people’s lives.
Ecem commented: “It feels amazing to be part of the group and have an article published. I feel grateful that I can give my opinion on things like this as I know how much it helps patients like me. Even just knowing that I can help someone else my age with the same condition, makes me feel amazing because research is really important.”
“I feel inspired to continue my education in health and social care, as I’ve been around it for a long a time and built up a lot of knowledge around the patient side of it. I would like to know more about the condition and hopefully work with and help young people, which I know I will find really rewarding.
“I hope to go to university when I finish my course at Xaverian to study on a health-related Degree. I am determined to complete my course, but I will need to carefully manage my illness and find the right medication. It can be very unpredictable, with no apparent cause when the condition gets worse, so it’s important to understand this to prevent it from interfering with my studies and my life.
Stephanie Bailey, Pastoral Manager at Xaverian College, said: “We are really pleased that Ecem has been chosen to be a member of Your Rheum Group and that she has contributed with her own personal experience of the condition. She has persevered though some difficult times in recent years and is determined not to let it hold her back. She has a lot to contribute to the research being undertaken in Rheumatology, and she should be justifiably proud of what she has achieved with the group and how she has inspired other young people with similar conditions.”
As one of the largest providers of post-16 education in the region, Xaverian College offers an extensive range of A Levels in addition to several BTEC courses. Visit xaverian.ac.uk to find out more.