When you’re living with a rare condition like Alkaptonuria (AKU), self-care is about taking consistent, intentional steps to support both your physical and mental wellbeing. It’s a vital part of living well with AKU, helping you recognise and manage symptoms, make lifestyle choices that benefit your health, and work in partnership with both your clinical team and your own lived experience.
For the first time we ran Self-Care 4 Rare, a week-long campaign all about what self-care really means when you have AKU. Through live sessions, blogs, and practical resources, we highlighted ways to support both body and mind, backed by real experiences, expert advice, and patient-led insight.
We opened the week with a live virtual session featuring Jim Fish, AKU patient, certified aquatic fitness coach, and long-time advocate for movement. Speaking directly from the pool, Jim shared how swimming has helped him manage joint pain, maintain fitness, and build a sense of connection and community. He also offered honest advice about overcoming barriers like body confidence and the fear of getting started.
Next, we were joined by Campbell Gillespie, one of only two known survivors of a direct lightning strike in the world. In a deeply personal and inspiring conversation, Campbell reflected on the physical and emotional challenges he’s faced and the mindset that helped him keep going. His story was a moving reminder that self-care isn’t just about routines or treatments, it’s about perspective, self-compassion, and the courage to keep going.
Later in the week, we published a blog on physical self-care, with a focus on meaningful movement. Jim returned to share more about the benefits of water-based exercise, while Sian Williams, Pilates instructor and AKU workshop speaker, offered expert tips on posture, core strength, and joint-friendly routines. We also heard from an AKU patient who shared their honest experience of recovering from knee replacement surgery, highlighting the importance of preparation, patience, and staying active.
Finally, we turned our attention to the emotional landscape of AKU and wrote a blog with input from mental health charity, Rareminds. The piece addressed the toll of delayed diagnosis, chronic pain, isolation, and invisible grief, as well as the emotional strain of self-advocacy. It also offered practical strategies for managing uncertainty and accessing specialist support tailored to the rare disease community.
Throughout the week, we also shared self-care quotes, tips, and small exercises over on Instagram, offering daily encouragement and inspiration for anyone navigating life with AKU.
Aquatic therapy for arthritic joints with Jim fish
Lightening Man with Campbell Gillespie