When Juliet Saffrey from London was diagnosed with lupus she was in the prime of her life, aged 24. “When I received my diagnosis in 2000 … up until that point I felt invincible,” Saffrey, now 49, says. “ I was travelling two or three times a year, I had bought a new car. I was just having the time of my life in my early 20s.”
Saffrey’s diagnosis came after she experienced symptoms such as extreme fatigue, to the point where she was falling asleep at work, as well as joint pains, headaches, and mouth ulcers. But fortunately, her GP immediately suspected lupus when Saffrey presented those symptoms and she received her diagnosis relatively quickly. “Having been diagnosed, I remember thinking: how is this going to change my life? I was in shock, thinking one minute I’m invisible and the next minute I’m not. I now have this illness, this shadow over me.”
Saffrey attempted to live her life as normally as she was able to, but at 28, she suddenly began to experience a life-threatening flare-up.
“I started to feel ill, and the pain in my legs made it impossible to walk without help, and I suffered from debilitating brain fog and an itchy rash covered my cheeks,” Saffrey says. She then had a seizure while at home in bed, and, having been rushed to hospital in an ambulance, was told that lupus had affected her brain. “My health deteriorated rapidly. I lost my memory, my hair and my weight dropped to just 4½ stone. The team at University College Hospital (UCH) in Euston, London worked tirelessly to stabilise me and, through the grace of God, I slowly began to recover.”
Since then, she says living with lupus has been a constant challenge: “I’ve had to adjust my work life, accept my limitations and face the emotional toll of living with a chronic illness. On top of lupus, I’ve developed osteoporosis, type 2 diabetes, heart disease and night blindness, all side-effects of having lupus and the medication I’ll need for the rest of my life.
“But despite everything, I’m endlessly grateful for the incredible specialists at UCH who have been by my side every step of the way.
“My husband has also been my rock, stepping in as both mum and dad to our daughters when I couldn’t. He’s shown me unwavering love and strength and I couldn’t have done this without him. Our daughters have had to grow up quickly and become self-sufficient, perhaps sooner than I would have liked but their resilience has been remarkable.”
Carol Ricketts, 60, from London, was diagnosed with lupus in 1995. But unlike Saffrey, who was fortunate to have a GP who understood the symptoms of lupus, Ricketts had to fight to get her diagnosis. “When I expressed my concerns of my health to one doctor, and that I believed there was something going on with me but I wasn’t sure what it was, he said to me, ‘What is it with you women, when you turn 30 you start falling apart,’” Ricketts says. “I was really angry when he said that.”
After Ricketts eventually received her diagnosis, her health took a turn for the worse in 1999 when complications led to her developing a blood clot in her left leg, which led to antiphospholipid syndrome, an immune disorder which causes an increased risk of blood clots. As a result, Ricketts was unable to continue working and hasn’t for the last 25 years.
Treatment has also been complicated by developing allergies to some of her medication. Ricketts believes that there needs to be more awareness and research into what can be done to treat the disease.
“Unfortunately there aren’t many medications out there for lupus, and for some of the medications which are out there, a lot of us can’t take them because of possibly having an allergy to them,” Ricketts says. “Some people understand what lupus is, but lots of other people will stare at you blankly because they don’t know about the condition or it is not of interest. But it definitely needs to be exposed a bit more.”
Amaka Ejibe, 42, from south London, was diagnosed with lupus around her 18th birthday, experiencing symptoms including severe fatigue, red eyes and joint pains. At first, her symptoms were dismissed as stress due to her A-level exams.
“I was blissfully unaware of the impact my diagnosis would have on my life,” Ejibe says. “I hadn’t heard of lupus … I would say that at a GP level back then, they were very naive to lupus as a [potential] diagnosis and as a condition which warranted intervention.”
The symptoms, which were sudden in their onset, progressed to become more serious, resulting in severe anaemia, weight loss, gastric issues and eventually Ejibe’s kidney function deteriorating.
“In my 20s, lupus didn’t really impact my life to the point that I needed to change anything. For example, I was working full-time. It was in my mid-30s when my condition started to really affect my day-to-day living and my lifestyle,” Ejibe says. She had periods where she was not able to work, has spent periods of several months in hospital, and was on dialysis for more than three years before having a kidney transplant in 2019.
Since her transplant, Ejibe has been able to manage her symptoms better than previously. But she believes there is still a long way to go with treatment for lupus.
“I think … it could be better,” Ejibe says. “Treatment-wise lupus is a very complex condition, and developing a treatment where you’re switching off part of an immune system is probably more complex than treating other situations. But I think it’s improving.”
She says the lack of treatment options may be due to the fact that nine in 10 people with lupus are women, with women’s health issues often being dismissed due to “medical misogyny”.
“I think with women’s issues, it can be dismissed because men don’t have the equivalent, so pain and fatigue can be dismissed as ‘the monthlies’, whereas there isn’t a comparison for men,” Ejibe says.
