Louise is a 22-year-old British photographer who was diagnosed with FA at age six. She works as a freelance photographer as well as market worker, drag king and nightclub safeguard. Experimenting mainly with documentary photography, she is interested in the formation of community. Louise is part of a drag collective where she runs community workshops to bring marginalized communities together.
Eleven years post-transplant, Louise has experienced many interactions where she’s been considered 'incapable' due to having the 'patient' or life-limiting illness' labels which others often don't see beyond. Louise acknowledges the low expectations from outsiders who may view FAdults solely as patients, when realistically, every FAdult has ambitions and faces many of the same issues people without FA experience. She’s interested in working with clinicians to understand how to improve patient experience.
Louise shares the understanding of extra barriers in FAdults’ lives and the resilience they embody alongside it. She welcomes others to share their experiences.