Living with a rare liver disease
Maxine Tapp, PSC Support Programme Development Officer, shared her story with Gilead, a pharmaceutical company that is investigating a potential treatment (Cilofexor) for PSC.
She not only raised awareness of PSC and our urgent need for curative treatment, but also the important work she carries out every day at PSC Support, advocating for better care and treatments for people with PSC.
'It was like being hit with a ton of bricks'
'We knew something was wrong, but to be told that you have a rare, life-threatening disease is life-changing and completely overwhelming,” she says. “It was like being hit by a ton of bricks — not just for me, but for my family as well, because I was so young. I didn’t know anyone else my age who was living with any kind of long-term illness.'