At 78-years of age, Jan was a regular in the gym – also the oldest on the floor. She took pride in her fitness and strength, lifting weights, running, eating healthily and training others in the gym.
Jan was used to setting high expectations of herself, so it came as a shock to her when she found herself struggling with simple tasks, like bending down to tie her shoelaces or getting up from sitting.
Then came the pain.
Jan explains how she’d kept this internal struggle to herself until finally, one day, she confided in her GP. She soon got on the right medication and 3 years later, she shared her story with us.
This was recorded 5 years ago, and Jan is now 86-years old and has been in remission since. She talks about being careful doing certain tasks that can impact her joints, but that she lives well with her condition and is still very mobile and healthy.
In this Dragon Talk ‘Lupus Series’ session, Andrew shares his personal journey of being diagnosed with lupus as a young adult, after experiencing severe unexplained fatigue and myalgia for years.
Doctors initially diagnosed him with an ongoing viral infection but his symptoms continued. Andrew explains how his mum had been the driving force behind him being taken seriously, fiercely advocating for him at doctors appointments. He talks about the challenges growing up with the unpredictability of his symptoms, but how his mum supported him through the tough times and acknowledges that he likely wouldn’t have gotten his diagnosis if not for her taking dragging him to see a rheumatologist that she knew. By this point he had all but lost hope of finding the answers, reluctantly agreeing to go.
It was after seeing the rheumatologist that he was quickly diagnosed with lupus. Andrew immediately went on the right medication which got his symptoms under control, and talks about the insistence of his rheumatologist asking for regular check-ups with routine blood tests.
It was after a routine blood test one day that his rheumatologist discovered he had developed stage IV lupus nephritis, which came as a shock. Andrew soon began an aggressive round of treatment, which included chemotherapy. His rheumatologist said he had been months away from full kidney failure had he not been going for routine check-ups.
Andrew speaks openly about managing lupus while working full-time, and the physical and emotional challenges that went with it. He talks about the lifestyle changes he made after being diagnosed with lupus nephritis, and how it improved his overall wellbeing. He became more active, reduced his intake of processed foods, cut out gluten, and more. This is Andrew’s personal story which he has generously shared with us in this session to help raise awareness of lupus and how it can manifest for different people, regardless of age or gender.
Autoimmune flares don’t happen ‘out of the blue’, even when it feels like it. Epigenetics can help explain why. Think of it as the way your environment and experiences like stress, infections, sleep, hormones, diet, even medications can switch certain immune genes on or off, without changing your DNA itself. In RA, these switches can turn up inflammation, making joints suddenly hurt, swell, or stiffen.
