Louise is a 23-year-old British photographer who was diagnosed with FA at age six and is now 11 years post-transplant. She works as a freelance photographer as well as market worker, drag king and nightclub safeguard. Louise strives to shift perceptions of FAdults beyond their medical conditions and collaborates with clinicians and researchers to improve patient experiences. She is passionate about highlighting the ambitions and everyday challenges faced by individuals with FA, advocating for better understanding and support within the medical community.

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.