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#ThisIsJIA by Gail Molyneaux

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I was diagnosed with Systemic Juvenile Idiopathic Arthritis (sJIA), also known as Still’s Disease, when I was just five years old back in 1973. It’s a rare and debilitating form of Juvenile Idiopathic Arthritis (JIA) that has profoundly impacted my life journey. 

The first signs were bronchitis-like symptoms that escalated into high fevers, swollen and painful ankles. After misdiagnosis and ineffective treatments, months of uncertainty followed with tests for various infections before finally concluding it was Juvenile Rheumatoid Arthritis (now called JIA). This marked the start of my lifelong relationship with rheumatologists and other medical professionals. 

Initial treatment, as it was very limited, involved steroids, anti-inflammatory drugs, and a diligent exercise regime encouraged by my supportive dad through small bribes despite my pain. The inflammation was difficult to control, requiring ankle callipers that led to teasing from other children. However, my family ensured I could still enjoy activities like hiking and camping, sometimes carried on my dad’s back. 

At age seven, my health critically worsened when I contracted encephalitis, hepatitis, glandular fever, and the rare Reye’s Syndrome, landing me in a coma with an uncertain recovery after my heart stopped beating. Thankfully, the doctors’ commitment and my family’s support helped me survive, though with persistent memory retention issues. 

My care transferred from my local rheumatologist, who had been very supportive, to a specialist in Juvenile Rheumatoid Arthritis down South. She played a pivotal role in my life with her dedicated treatment approach of anti-inflammatories, steroids, antibiotics and exercises. This allowed me to eventually go into remission for a couple of years until a polyarthritic flare-up followed after stepping on something sharp. 

Over the years, I underwent various treatments like disease-modifying drugs, such as methotrexate, Sulphasalazine and many others, physiotherapy, hydrotherapy, and multiple surgeries including extensive hip replacements. Education was impacted by long absences but I persevered through home tuition, supportive friends, and cherished horse-riding as an escape. I looked like everyone else once on the horse. 

While navigating unhealthy relationships, I eventually found a supportive partner and we lived life to the full motorbiking, despite finding it difficult to manoeuvre on and off the bike.  I had always worked after leaving school at 16, but pursued higher education in my mid-twenties, despite the difficulties of the memory retention problems and the extensive writing that was required which caused adverse repercussions on many of my joints.  However, after attaining a degree I embarked on a systems engineering career which I loved, but unfortunately, it was cut short by redundancy in 2003 due to frequent hospitalisations. Determined to work, I started a secretarial services business. 

After years of trying and planning extensively with my drugs, for a baby,  after a hip revision, I finally became pregnant but experienced severe post-partum flare-ups while caring for my newborn daughter and poorly parents. Though treatment with biologics like Enbrel helped, I acquired neutropenia and my condition progressed with neck, spine and shoulder deterioration leading to an ankylosing spondylitis diagnosis. 

Despite immense challenges like multiple hip replacements, continued joint damage and the devastating losses of my father, mother and mother-in-law, I’ve remained resilient through tremendous determination, family/friend support and alternative therapies like essential oils and qigong. 

Maintaining open communication and mutual respect with my consultants has been invaluable, as has voluntary work and cherishing motherhood. Confidence issues stemming from an unconventional childhood linger but have improved significantly. Multiple joint damage and pain continue to govern and impact my life. I would love to ride a bicycle with my daughter and husband, but limited movement and pain hinder this. I love gardening but it doesn’t love me and I’m restricted in what I can do. Fatigue is also a huge issue. I continue to undertake a lot of voluntary work due to the impact JIA has had on my career and work.  

I’m now awaiting further shoulder replacement surgery while writing a book about my decades-long journey with sJIA and chronic pain in the hope of helping others affected by this disease. With resilience and love from my support system, I strive to live life to the fullest despite the obstacles Still’s Disease presents 

My advice for anyone living with JIA is to just try things and never give up.