When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia.
But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: lupus.
“It was all a blur, but I remember the medical staff repeatedly asking Amélie the same questions, which we thought were really weird at the time,” recalls Anne. These included: “Is your hair falling out?”; “Have you noticed any rashes?”; and “Do your joints ache?” among others.
With lupus, the body’s defence mechanism goes into overdrive and starts to attack itself. The symptoms are many and varied, and the illness often mimics other diseases, explains Lupus Europe.
This is why Amélie’s diagnosis took several months. During that time she underwent numerous blood tests, as well as genetic tests and a bone marrow biopsy, so that doctors could rule out other diseases like leukaemia and the blood disorder ITP.
“Six months is actually a very short time for a lupus diagnosis,” says Anne, who is Vice Chair of Lupus Europe and a board member at Lupus France. “It’s a very strange disease that mostly affects women. There are 11 symptoms and as a general rule, if you have four of those, you probably have it,” she adds.
Having said that, Amélie’s only symptoms were low platelets and a rash across her nose and cheeks that’s very characteristic of lupus because the pattern resembles the facial markings of a wolf.
Since that diagnosis several years ago, Anne has learned a lot about this rare auto-immune disease and is keen to help raise awareness. She also hopes to see some advances that will make management of the condition easier on patients.
“At the moment, Amélie has to get a blood test whenever she’s not feeling well, because she never knows whether it’s a lupus flare up or just an infection,” explains Anne. “It would be very useful if there was some kind home blood test to check her platelet count,” similar to the tests that people with diabetes use.
Fortunately, Amelie has been able to manage her condition through medication and regular blood tests, and hasn’t had a flare up in ages. Even when her lupus is "quiet" she lives with bouts of profound fatigue and "a kind of dizziness that she can’t really describe".
Anne is optimistic, but the biggest lesson she’s learned about lupus is that it’s unpredictable. “You can make plans but you have to be willing to let those go. You have to learn to adapt and take life as it comes,” she tells.