We all do it. Make assumptions and judgements, based on our own experiences and personalities, or because we just don't know or understand. Children with juvenile arthritis know what that can feel like: after all, surely arthritis is connected to ageing, or at least people over the age of 60?
Adam Hooda's symptoms started at age 7, his parents becoming aware of a difference in his range of mobility and gait, mainly during his much loved dance classes. Imagine, a 7-year-old suddenly struggling to get up off the floor, or shuffling up the stairs grasping the bannister rails for assistance. For 7 years Adam and his family hoped for a diagnosis that could explain this change, and his discomfort and pain. Diagnoses ranged from growing pains to vitamin deficiencies and sports injuries. Not only were the social and physical developmental stages of Adam's childhood affected—limitations in peer-interaction or missing out on simple play—there were also years of uncertainty around Adam's health, and no one could tell them why.
“The big thing about not knowing was how much stress it put on myself and my parents. Though being diagnosed with arthritis is not a good thing, it's better knowing what's actually wrong so you can make steps to better educate yourself or do something about it. As such, despite whatever doctors were saying we kept trying to get second opinions with other consultants and GPs”.
So finally, aged 14, Adam had an MRI and received a diagnosis of juvenile idiopathic arthritis (JIA). That must have offered some relief? “Yes, but in the first few years I was on methotrexate, and the toxicities caused me to have migraines. Because my arthritis was polyarticular, the pain spread to all my joints; my knees were the worst, but it also affected my shoulders, my feet, and my wrists. I really needed something to control the pain as it was interfering with my education.”
Adam is charming, engaging, and seemingly grounded (even more so than the average 21-year-old) and I am surprised meeting him how this immediately comes across, with no trace of resentment, or social awkwardness from his formative years of being different or excluded. Even now Adam's chronic pain and fatigue have not disappeared, although it's better controlled with the biologic, etanercept, administered subcutaneously once a week for the last 4 years.
“I have had pain for most of my life so I have learnt how to accommodate my mobility, or avoid positions and activities that cause the most pain”, for example, he says, sitting in a lecture theatre in the same position for too long. So Adam has had to come up with many workarounds. He mentions this because he was regularly in lecture theatres up until the coronavirus lockdown, studying biochemistry at Kings College London, UK: “It is because of my own experience that I was interested in immunology and epidemiology”, he says. Adam is in his final year, but his exams haven't been cancelled or postponed; instead Adam faces more disruption and change as he will now be examined online. “This is very different to what we have been preparing for. As I am in the high-risk group on immunosuppressants, I can't leave the house, I'm shielding. Everyone else can go out once a day. I do have anxiety about getting infected—I can't dwell on it—it's just something I have to deal with, like my condition”.
How is he feeling about the restrictions? “I studied viruses so I understand about transmission. Anyone can get it, it's not only those who are at risk. But I have to stay at home because it is more dangerous for me”. His outlook is rational, but he is exercising self-care—Adam has come to terms with his limitations, but he doesn't allow himself to be limited by JIA. We both agree that the governmental message could be stronger, with more of a human angle; I suggest Adam's story could reach the younger generation, particularly in creating awareness around a less visible, at-risk group during the coronavirus pandemic.
That is exactly what he is doing with the UK charity Versus Arthritis. Adam has recently joined the Patient Insight Partners network—comprising a group of volunteers all living with a musculoskeletal condition—who are instrumental in bringing a patient perspective to the charity's research decision making. “As a young person with arthritis I feel I need to be ambassadorial. JIA is still unknown, but not rare. It is, however, still seen as an elderly disease. If I can, and I can, I should be talking about it and giving my support”. He is looking forward to working with Versus Arthritis to review research proposals: “I am in science now and I want this field to progress”. Adam seems to look for silver linings, and overall his attitude is impressively mature and self-aware—“It is sometimes easier said than done but feeling sorry for myself doesn't help me. I have a great network, including a very supportive family around me and I have always had someone to hold my hand.”
“I make a conscious effort not to allow this illness to destroy my spirit. It doesn't define me, and I am now happy with where I am at”. I feel proud of Adam, and I have only just met him, so I know his family and friends must feel this too. What next for Adam? Of course, he knows where he is going: “I want to work in health care and economic policy, in humanitarian environments, not the lab. Firstly, work experience and then a Masters”. No doubt in my mind that's where he will be.
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