ENGLAND CHAMPION

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Shuaib Ali (he/him)

LIVED EXPERIENCE
Rare Disease, Disability, Transplant, Renal/Urology

KEY INFORMATION

Place of Birth: Blackburn, England
Current location: Bedfordshire, England
Age: 28 years old
Language/s: English only
LGBTQIA+: No
CALD/Heritage: British-Pakistani
Diagnoses: Prune Belly Syndrome, Chronic Kidney Disease, Scoliosis, Rheumatoid Arthritis
Healthcare Access: Primary Health Care, Secondary, Tertiary

BIO

Shuaib was naturally drawn to a career in advocacy, peer-education and consultancy from his lived experience of invisible illness, rare disease, transplant and disability. Born with Prune Belly Syndrome, a rare disease affecting his abdomen, bladder and causing organ failure of his kidneys, Shuaib has lived his life in and out of hospital with multiple surgeries, abdomen and bladder reconstruction and two kidney transplants at 10 (2004) and 23 (2017) years of age. His resulting disability impacted his education and professional life, giving up a career as a much adored teacher. To continue his passion for education, Shuaib began to use his lived experience to coach other renal patients, helping them to feel confident and navigate the barriers that may present themselves. Shuaib found that many others with chronic illness, but specifically chronic kidney disease (CKD) could benefit from improved peer support and education on prevention, dialysis, renal failure and transplant. He wishes to be the ambassador for the cause, creating and hosting the 'Just Renal' podcast to support everyone affected by renal failure through practitioner insights & positive stories that have come from meeting renal patients. 

Beyond renal health,  Shuaib's advocacy focus areas include reducing barriers for people with hidden/invisible disabilities, mobility aids, rare disease, Mitrofanoff/bladder ostomies, impact of illness and adaptions to workplaces and education. Shuaib wishes to share and apply his lived experience through speaking roles, writing, coaching, designing and delivering workshops, research, product testing, consultancy and ambassador roles.

Having lived with a rare disease Shuaib has managed to navigate how to live without barriers and  now supports others to be confident about their own conditions, to own them and live their lives without barriers too. The aim of Shuaib's work and advocacy is for others to be more supported, and feel heard. 

ACHIEVEMENTS

  • Host 'Just Renal' Podcast

  • Renal Patient Peer Support - Royal Free Hospital London