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Patient Perspective: Jane Burns SJS story

In this video, Jane Burns shares her life story of living with Stevens-Johnson Syndrome or ‘SJS/10’, a serious condition which causes loss of skin and can be fatal, after an adverse reaction to a change in her medication aged 19. Jane has sought to share her lived experience to raise awareness and help shape pharmacogenetic research to improve health outcomes for others. Pharmacogenetic testing will be able to give the answers as to whether a medication is suitable for people or not and what dosage they need, taking away the risk. “I think involving patient voices and those with lived experience of health conditions in the research process is integral in ensuring the research benefits those who are impacted most”, says Jane. This talk by Jane was part of the Sir Colin Dollery FORUM Annual Lecture 2022, held in Liverpool. The Academy of Medical Sciences is the independent, expert voice of biomedical and health research in the UK. Our mission is to help create an open and progressive research sector to improve the health of people everywhere. Find the Academy of Medical Sciences online: Website: http://acmedsci.ac.uk/ Twitter:   / acmedsci   Facebook:   / acmedsci   Instagram:   / acmedsci