ABOUT THIS EPISODE
Dr Raj Amarnani joins Debbie and Katy to share his unique perspective as someone who not only lives with Axial SpA but also treats Axial SpA patients in his clinical practice. He reflects on developing symptoms at age 11 “lower back pain, alternating buttock pain, out of the blue” and navigating a six‑year diagnostic delay that reshaped his teenage life, forcing him to stop sport and unexpectedly leading him to new passions, including magic.
Raj discusses the relief and validation of finally receiving a diagnosis, how those formative experiences shaped his communication style as a clinician, and why empathy, language, and continuity of care matter so deeply. The conversation then explores physical activity, fear, fatigue, pacing, physiotherapy, hydrotherapy, nutrition, and the complexity of pain, alongside practical advice for getting the most out of short clinical appointments.
Raj also shares insights into personalised medicine, future developments in rheumatology, and how he supports patients who prefer non‑pharmacological approaches, offering a thoughtful blend of lived experience and professional expertise.
Key Topics
- Childhood onset AxSpA and its impact
- Navigating school and teenage life with pain
- Losing sport and discovering new interests (“I joined the Magic Circle…”)
- Relief and validation after diagnosis
- How lived experience influences clinical practice
- Evidence for physical activity in inflammatory arthritis
- Fear, fatigue, pacing and barriers to movement
- How patients can prepare for short clinical appointments
- Hydrotherapy, physiotherapy, and adapting exercise
- Pain complexity and differentiating types of pain
- Nutrition and emerging research
- Personalised medicine and future developments
- Patient preferences around medication
- Treating people as individuals, not just conditions
Key quotes
- “I’m a firm believer that when one door closes, other doors open.”
- “I used to be a very sporty kid… and essentially overnight all of that stopped.”
- “There’s that validation, gosh, I’m not making this up.”
- “Fatigue is one of the hardest barriers… even EULAR hasn’t fully cracked it.”
- “Pain is such a complex area — so multifactorial.”
- “Treating the actual person, not just the condition, matters so much.”
Key words: Axial SpA, AxSpA, AS, juvenile onset, diagnosis delay, fatigue, pain, pacing, physical activity, exercise prescription, hydrotherapy, physiotherapy, personalised medicine, rheumatology, nutrition, patient communication, chronic illness, MSK medicine.
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Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys, and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content. For more information, head to https://inflammatoryarthritis.org/
