17 March 2026
Childhood onset diseases like Juvenile Idiopathic Arthritis (JIA), while challenging to diagnose and treat (as well as impacting the entire experience of the affected child or young person), can also build resilience, progress, and partnership. The journey of living with and treating this lifelong condition can be turbulent but valuable.
As a patient and a clinician, we’ve walked this road together and today we’re sharing our story. Whether you're a healthcare professional, a young person living with long-term condition like JIA, or someone supporting them - care goes far beyond the joints. It’s about children and young people, their families, their stories, and the systems that either support or fail them.
The Diagnosis That Changed Everything
Luke:
I’m from West London, and I’ve lived with Juvenile Idiopathic Arthritis since I was 11. I self-inject adalimumab every two weeks and take Sulfasalazine daily.
I never imagined that a swollen ankle would change my life. After two years of misdiagnoses and endless appointments, my parents and I finally got an answer. The diagnosis brought some relief—at last, we had a name. But it also felt like the ground shifted beneath me. It wasn’t just about the physical pain—it was about identity, lost dreams of football, lifestyle changes, and a future that suddenly felt uncertain.
Aicha:
Early diagnosis is crucial. It allows us to prevent joint damage and dramatically improve long-term outcomes. But more than that, putting a name to the pain brings validation. It turns fear into something we can manage—together.
Despite this, audit after audit reveals that delays in JIA diagnosis remain far too common. Paediatric and adolescent rheumatologists are still hard to reach and care is divided (1). We need to shift beyond simply “educating” primary care providers. We need a cultural movement that makes it clear: arthritis is not just an older person’s disease.
A Partnership, Not a Prescription
Luke:
What made the biggest difference for me wasn’t just medication—it was being seen and heard. When Dr. Sen and Dr. Aicha asked about me—my hobbies, my ambitions, my life—I felt like more than just a diagnosis. The treatment began to fit around my needs, rather than the other way around.
That shift in mindset empowered me. I gradually took ownership of my health and began leading the way to remission.
Aicha:
That’s the essence of truly personalised care. Patients are the experts in their own lives. Our role as clinicians is to co-create a safe, supportive space—shaping care plans around goals, not just symptoms. Over time, the clinician’s role evolves from expert to facilitator, helping young people and their families unlock their potential.
We must look beyond checklists and clinical scores. Two patients with the same diagnosis and on the same treatment can have completely different outcomes—because less than 30% of those outcomes depend on healthcare provided and are shaped by psychosocial circumstances so individuals. (2)
Equity: Seeing and Hearing Every Patient
Luke:
I’ve met others whose journeys were very different. Some waited years to be diagnosed. Others weren’t believed when they described their pain—especially when scans didn’t show inflammation. Pain and fatigue are real, even when invisible.
Factors like race, gender, income, or postcode shouldn’t determine how quickly or how well you’re treated. But too often, they do.
Aicha:
That’s a systemic failure. Inequity fails everyone.
Yes, we talk more now about “difficult-to-treat” arthritis. But if we listen closely to patients’ stories, we’ll often find the roots of poor outcomes: poverty, trauma, substance misuse, poor housing, low health literacy. These aren’t just background issues—they are the cause of the cause. [3-5]
Our mission goes beyond awareness. It must be a call to action—to dismantle the systemic and cultural barriers that prevent people from accessing the care and support they deserve. Inclusive care begins with truly listening to every patient, in every context.
Looking Beyond the Joint
Luke:
This journey isn’t just about managing inflammation. It’s about mental health, fatigue, isolation, and learning how to ask for help. It’s about living with the invisible aspects of a very visible condition.
Here’s the framework I’ve developed from my own experience:
Luke’s Framework for Supporting Young People with JIA
- Create Safe Spaces to Talk Openly
Young people need emotional support, not just medication. Normalize conversations about invisible illness. Shame thrives in silence—vulnerability must be seen as strength. - Better Education in Schools
Schools often lack awareness of conditions like JIA. A simple workshop can prevent bullying and build empathy. It’s easier to ask for help when people understand what you’re going through. - Peer Mentorship Programs
Hearing from someone just a few years ahead can be life-changing. Mentors offer real hope that things do get better. We need more lived experience stories—of people not just surviving, but thriving. - Find a Passion Outside of Arthritis
Whether it’s open-water swimming or chess, find something that brings you joy and connects you to others. Your identity is more than your illness. - Encourage Physical Activity, Tailored to Ability
Movement restored my confidence and strength. Introduce young people to sports or exercise early—guided by professionals who understand JIA. - Holistic Support: Beyond Medication
Mental health, nutrition, sleep, and stress all matter. Practical tools like breathwork, meditation, and journaling helped me find calm and clarity. Discovering your core values builds inner strength.
Aicha:
Exactly. Care for young people must be holistic and developmentally appropriate. We must look beyond X-rays and lab results to understand their real lives—their hopes, stresses, relationships, and environments.
That’s why I stepped away from traditional training to develop my skills in health coaching. Coaching helped me shift my conversations—adding depth, connection, and meaning.
From Remission to Advocacy
Luke:
Despite my arthritis, I’ve achieved things many would consider impossible:
- I swam solo from Jersey to France
- Attempted a solo English Channel swim
- Completed a Full Ironman
- Ran the Athens Marathon
- Earned a Maths degree from Leeds
- Became a Software Engineering Manager leading three teams
- Spoken at a Facebook engineering meetup
But this story isn’t about medals or records. It’s about hope. It’s about what happens when you're seen, supported, and empowered.
My journey didn’t end with remission. The next chapter is about advocacy. I want to serve as a beacon of possibility for every child and adult living with an autoimmune disease.[6]
To the 11-year-old version of me—and every young person suffering silently:
You are not broken. You are not alone. Your story is just beginning.
One day, you'll go from crutches... to kilometres.
Aicha:
And to the medical student I once was:
Care is more than prescribing—it’s coaching, advocating, and building trust. It's about holistic, inclusive, human-centred care.
An opportunity to Reflect—and Recommit
In this call we honour the resilience of every child, adolescent, and adult living with longterm condition like JIA. We celebrate how far we’ve come—and recommit to the work still ahead.
We believe in a future where:
- Every child and young person receives a timely diagnosis
- Every voice is heard and respected
- Care is collaborative and personalised
- Equity is not an afterthought, but the foundation
Together, we’re not just treating long term conditions—we’re rewriting what it means to live with them.
Signed,
Luke, Patient Advocate
Aicha, Consultant Rheumatologist and health coach
References
- A review of the quality of care provided to children and young adults with juvenile idiopathic arthritis. NCEPOD. Extracted from [https://ncepod.org.uk/2025jia/Full%20report_JIA_Joint%20Care.pdf ] on 07.12.2025
- Shortell SM. Bridging the Divide Between Health and Health Care. JAMA. 2013;309(11):1121–1122. doi:10.1001/jama.2013.887
- Gorter A, Bakker MM, Ten Klooster PM, Boonen A, Vonkeman HE. The impact of health literacy: associations with disease activity and medication prescription in patients with rheumatoid arthritis. Rheumatology (Oxford). 2023 Oct 3;62(10):3409-3415. doi: 10.1093/rheumatology/kead094. PMID: 36825825; PMCID: PMC10547512.
- Izadi Z, Li J, Evans M, et al. Socioeconomic Disparities in Functional Status in a National Sample of Patients With Rheumatoid Arthritis. JAMA Netw Open. 2021;4(8):e2119400. doi:10.1001/jamanetworkopen.2021.19400
- Aicha Bouraoui, James Glanville, Samiha Ismail, Corinne Fisher, Sophia Mavrommatis, Maria Leandro, Joanna Gupta, Stephanie Meyer, Peter Shakeshaft, Tracey Crissell, Debajit Sen,Relationship between ethnicity and multidisciplinary intervention for young people with rheumatic and musculoskeletal diseases, Future Healthcare Journal,Volume 9, Issue 3, 2022, ages 317-320, ISSN 2514-6645, https://doi.org/10.7861/fhj.2022-0034
- https://www.youtube.com/watch?v=Tw1SeF0GLzc