Eastern patient urges others to Be Part of Research for International Clinical Trials Day
To mark this year's International Clinical Trials Day, a Suffolk woman who has participated in life changing medical research is urging others to take part.
Joanne Mahon, 65, from Haverhill in Suffolk suffers from the rare auto-immune disease, Sarcoidosis, which at times left her unable to even sit up. Sarcoidosis can cause a variety of symptoms including regular chest infections and skin lesions, as well as chronic fatigue.
Since taking part in a research study funded by the NIHR and led by the Norfolk and Norwich University Hospital (NNUH), Joanne has seen a vast improvement in her condition. As part of the NIHR’s Be Part of Research campaign for International Clinical Trials Day, Joanne hopes that by sharing her story others will be inspired to get involved.
Joanne, who is Managing Director of Diamond Dogs, a luxury pet accessories brand, had lived an active life up until her diagnosis 9 years ago. However, she soon began to struggle with daily life, finding it difficult to visit the supermarket or walk a short distance. She suffered from regular and severe chest infections and would experience vision and memory problems and ulcers. Her chronic fatigue left her, “feeling like a prisoner in her own body”.
Her consultant told her about the study which tested a medication aiming to help symptoms of chronic fatigue in sarcoidosis. The trial had an immediate impact, beforehand she struggled to get out of bed, but with the medication Joanne could walk for 20 minutes. She said, “Taking part has been the best thing I have done since my diagnosis as it’s allowed me to live a more independent life. It’s changed my life”.
She felt completely reassured throughout the entire process and is grateful to the “fantastic” staff who were, “always willing to spend the time to answer all my questions, and there were a lot of them!”
Joanne felt research staff placed her and other patients at the heart of the process and completely understood the limitations of her condition. She said, “They were so amenable to my condition, to have doctors and nurses who were so understanding was really helpful”.
The study also offered Joanne a chance to meet other sarcoidosis patients, something she had never done before. She said, “You can feel so isolated with this condition, like you’re the only person in the world struggling. Being able to listen to and share the experiences of other sarcoidosis patients was so enlightening”.
The NIHR’s Clinical Director for the Eastern region, Professor Jeremy Turner, said, “We are incredibly grateful to Joanne, not only for volunteering to take part in our research, but also for her ongoing support. We truly could not do it without the involvement of people like her. It is our mission to make sure every patient has the opportunity to Be Part of Research if possible, whether it be by participating in a clinical trial or by pledging to support the work being carried out to improve treatments for patients now, and in the future.”
Joanne is urging others to take part in research, believing it is the best way to push medicine forward and find cures for many different illnesses. “I’m really keen to see research done, because if we don’t we can’t improve things and we can’t improve the quality of life for patients like me and for others who suffer from this disease or other conditions. It is a positive step forward to help people both now and in the future”.
She acknowledged people may be hesitant about taking part in a study but said, “if you’re ill you have nothing to lose, you have to give yourself some hope that things can improve”.