Now 3 years ago (Feb 2023), my mother, Jane, sadly passed away after a near-eight-year struggle with respiratory relapsing polychondritis. Initially we thought she just had a persistent cough, but after dozens of consultations with a wide range of rheumatic, autoimmune and respiratory specialists, she was given a tentative RP diagnosis based on a few seemingly disparate symptoms. She followed the only available course of treatment at the time – a mixture of strong steroids and complementary medications – but sadly continued to decline. Due to some tissue damage in her lungs, she was given a respiratory stent to support her airways, and later, she was shortlisted for clinical trials of a newer ‘biologic’ treatment but was unable to continue as the damage she had sustained made proceeding too risky.
My mother understood the positive impact tailored and timely support could yield. She was a carer in a residential home for vulnerable adults, and an active member of online RP support groups. During her period of illness, she spent much of her time researching different doctors/researchers, treatments and support provisions to share with others. She was intelligent, caring, conscientious and fiercely pragmatic. My family and I were incredibly proud of her stoicism in the face of her severe and elusive illness.
Myself and 7 close friends (based in Berkshire, Bristol, Cambridge, Plymouth and London) are running the RunCzech Prague Marathon on 2nd May 2026 and are aiming to raise money for both Relapsing Polychondritis Foundation and The Wren Project – charities whose aims are to advance research for RP and support autoimmune disease sufferers worldwide and in the UK. As part of the fundraising campaign, we also hope to raise some awareness for RP and other rare autoimmune diseases. Enduring a chronic and/or terminal disease is difficult enough when it is familiar and identifiable, let alone when it is faceless and unknown. Moreover, there are many people with rare diseases with experiences like my mother’s; had she been diagnosed earlier with RP, she might have been well enough to take part in clinical trials, facilitating a potentially improved prognosis and more productive contribution to research.
When she passed away, Jane left her elderly mother, my father, myself (23 at the time), and my younger sister (19 at the time) behind. She was only 47 and missed out on half of her life: her aspirations to travel, work and spend time with those important to her. Similar gaps are left by many women. Because autoimmune diseases are far more likely affect women than men, there are many sisters, mothers, aunties and grandmothers who are also in need of safe communities where they can prioritise their own wellbeing needs away from feelings of family caring obligations. Raising money and awareness concurrently will hopefully make a big impact on the physical and mental wellbeing of RP sufferers and their families in the future.
In researching events that could help us achieve this goal, I realised that Prague is the city in which Relapsing Polychondritis was discovered by a physiologist called Rudolf Jaksch von Wartenhorst in 1923, under the original ‘Polychondropathia’ nomenclature. Given this fact, and the existing ‘Race for RP’ initiative by the Relapsing Polychondritis Foundation, the Prague Marathon felt like a felicitous fundraising challenge.
Our marathon run will be in memory of my mother, Jane Bowles, but will hopefully help RP sufferers find the information, support or treatment they need to live full and happy lives.
Tom