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Living with Systemic Juvenile Idiopathic Arthritis (sJIA)

Author: Gail Molyneaux

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I have lived with Systemic Juvenile Idiopathic Arthritis (sJIA), also known as Still’s Disease, since the age of four. I’m now 55 years old. sJIA is a rare and debilitating form of Juvenile Idiopathic Arthritis (JIA). My journey with this condition has been marked by challenges and triumphs. Here is a summary of my story:

The journey began in April 1973 at the age of four. I’d had bronchitis for months along with the usual coughs and colds kids have. This escalated into fevers that were through the roof and my ankles became swollen and painful. It was initially misdiagnosed as a bug, and painkillers were given.

I was prescribed aspirin for the pain and swelling. However, persistent symptoms, including high inflammatory markers and neck pain led to a hospital admission whereupon a series of tests were undertaken, including the Rose test and a Paul Bunnell test. I was also given a course of Septrin, an antibiotic to treat pneumonia, on the assumption it might be due to a kidney infection, but this made no difference to my symptoms, and I continued in this vein with fevers, pain, swelling and heat in the left ankle, as well as tiredness. I also had anaemia. 

Juvenile Rheumatoid Arthritis (JRA) was suspected, but not concluded.

After months of uncertainty, and further tests for Brucellosis, in addition to possible bacterial causes, especially TB and gram-positive osteomyelitis (inflammation and infection of the bone), it was concluded the diagnosis was Juvenile Rheumatoid Arthritis (now known as Juvenile Idiopathic Arthritis). I was referred to a paediatric rheumatologist, marking the beginning of a lifelong relationship with medical professionals.

Treatment began with steroids and an exercise regime to manage the condition, with my Dad diligently encouraging me to do them to the best of my ability with bribes of 10p’s and 50p’s, despite the pain and discomfort. The inflammation remained challenging to control, leading to the use of callipers for ankle support, which sometimes resulted in teasing from other children.

Despite the hardships, my family provided unwavering support, enabling me to enjoy outdoor activities and family holidays. I was taken on mountain hikes and camping trips, often on my Dad’s back.

Several years later, at age seven, my health took a critical turn when I contracted Encephalitis, Hepatitis, and Glandular fever, later diagnosed as Reyes Syndrome, a rare disorder that can cause serious liver and brain damage now known to be associated with viral infections and possible aspirin use. I spent time in a coma, and my recovery was uncertain especially when my heart stopped. Thankfully, I survived, due to the commitment of the doctors and my family, though some memory problems persist.

My care was transferred to Dr. Ansell at the Canadian Red Cross Hospital in Berkshire, known as ‘Taplow’. It was a specialist hospital for children with Still’s Disease. She played a significant role in my life and I will never forget her.  She was totally committed to caring for the young children she treated. My local rheumatologist at Chester City Hospital liaised with her to keep the continuity of care.  She suggested in the first instance an anti-inflammatory regime, regular aspirin, prednisolone, and antibiotics, as well as the exercise routine. This was imperative to keep the joints strong and flexible.

My treatment followed in this vein, and although my hip, shoulders, knee and elbow were troublesome I eventually started to go into remission. For a couple of years, my Stills was stable despite some niggles, until I stepped on something sharp on the beach in 1983. What followed was a polyarthritic flare-up. Multiple joints were inflamed. I had to have my knee aspirated and my anti-inflammatories increased. My joint movement became very limited. I had to work extra hard with my exercises on my lower limbs and shoulders.  I never went into remission again.

A soft tissue release operation was carried out at Taplow which involved long-term traction. It bided me some time before the inevitable hip replacement which I had at age eighteen, at Wexham Park Hospital in Berkshire, along with a synovectomy on my knee the year after.

Eventually, I was transferred to Salford Royal Hospital, through the recommendation of Dr Ansell. The lengthy distances involved in going to Taplow were becoming difficult for my Dad.

My education was affected by long absences due to the illness, but I did receive one-to-one home tuition. Despite constant pain and isolation, I persevered and occasionally joined activities with my peers. I faced bullying in junior school and this had a detrimental effect on me. However, I did have some genuine lovely friends who liked me for who I was. I sought solace in horse riding, where I felt a sense of freedom. I looked like everyone else once on the horse.

I underwent various treatments over the years including disease-modifying drugs, such as Sulphasalazine, hydroxychloroquine, penicillamine, and methotrexate as well as regular physiotherapy and hydrotherapy sessions, in addition to my own exercise regime. My Stills disease progressed and after four years my new hip had come loose. I needed a bilateral hip replacement which I had at Wrightington Hospital, in Wigan by an amazing man, Mr Wroblewski.  

As I grew older, I navigated through unhealthy relationships but eventually found a more supportive partner whom I married. I also pursued higher education in later years, earning a degree in biology and computers as well as gaining much-needed confidence.  I embarked on a career as a Systems Engineer but faced challenges due to frequent hospitalizations and was devasted when I was made redundant in 2003. I was good at my job, and I’d worked hard to get there.

My determination to maintain employment led to me starting a little secretarial services business.

My methotrexate was gradually decreased and steroids were reintroduced due to us wanting a family. I became pregnant after four years of trying, with a hip revision in between. We were elated given my endometriosis was getting in the way so to speak.  A planned caesarean took place on 23rd November 2005. The pregnancy itself was manageable, despite many challenges, however, I had a severe flare-up of my condition after twelve months of breastfeeding my daughter. I continued to experience flare-ups for a couple of years afterwards which was very difficult to deal with, especially having a young baby and poorly parents. Eventually, I restarted the methotrexate and also received a biological drug called Enbrel. It helped with the frequency of the flare-ups. After some time I acquired neutropenia which resulted in the removal of the methotrexate. I’d had a number of other health issues alongside my Stills.

My condition progressed and my neck and spine deteriorated along with my shoulders. I underwent multiple hip surgeries over time and was diagnosed with Ankylosing Spondylitis (AS) a few years ago. I’m now awaiting further surgery for a reversal shoulder replacement this year.  Despite these challenges, I have remained resilient, engaged in huge amounts of voluntary work, and cherished my role as a mother.

I lost my Dad in 2006 and my Mum in 2013, both devastating losses for me, along with my Mother-in-law in 2011.

I am strong-minded and have the determination to live life to the fullest, with the support of my family and friends, who are my rock despite the obstacles posed by Still’s Disease and its complications. I do have confidence issues, that stemmed from an unconventional childhood, however it is much improved now.

My relationships with my rheumatologists and surgeons have been second to none. We have frank discussions, I am open and honest, and my consultants respect the self-care I undertake with alternative medicine, including pure therapeutic-grade essential oils and qigong exercise classes. I am very lucky.

I’m now writing a book about my journey with sJIA and the challenges I’ve faced, with the aim of helping others with this disease and chronic pain.

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