“I didn’t invite this illness into my life, that’s why I want to get rid of it”, says Patricia Piccolo, a 55-year-old secretary at a large audit firm in Luxembourg. The cross-border worker from France is determined to rally support for the Sclérolife non-profit in an attempt to treat her “invisible” illness.
She says she has always had plenty of support from her employer. “At the office I have always been transparent, I have always spoken about my illness. Because for me, it helps to put a name to my ailments.”
Piccolo has suffered from multiple sclerosis for 20 years and is constantly confronted with flare-ups, which she has to manage carefully.
Multiple sclerosis is an autoimmune disease that affects the central nervous system and causes damaged to the myelin sheath, which insulates and protects nerve fibres, almost like plastic around electrical wires. It also speeds up the propagation of nerve impulses that communicate between the brain and the body.
“This is a bizarre and invisible illness”, Piccolo says. She felt for a long time that “there was something wrong with my body”.
Among her symptoms were frequent falls – often during exercise – rapid breathlessness, fatigue – even upon waking – and “pins and needles all over my body, in my hands. I would often knock over bottles of water in restaurants because I had no feeling in my hands.”
Piccolo’s first flare-up occurred in 2003. “I experienced a waxy sensation on my right leg. I told myself it was down to exhaustion, that I needed to rest. And after a few weeks, the constant sensation on my leg and arm disappeared.”
These were the first symptoms of a disease whose name she would not encounter until two years later. Piccolo was just 35 years old when a second flare-up paralysed her entire left side.
This time, she was referred to a hospital in Metz by a neurologist. She underwent a lumbar puncture and an MRI, which confirmed her diagnosis of multiple sclerosis that subsequently made her life “hell”.
Nowadays, Piccolo is confined to a wheelchair as a result of the disease.
Over the last year, MS has taken over her life, she says. “I can still do my own transfers into bed, I can wash myself, but going shopping has become impossible. I can’t go to the cinema, to the theatre, because so many places aren’t adapted for people with reduced mobility. There’s always an issue in restaurants, there are always heavy doors in supermarkets or shops. It’s very complicated.”
On 30 May, World Multiple Sclerosis Day, it should be highlighted that the illness represents “the leading cause of severe non-traumatic disability in young adults. Symptoms begin to occur at the average age of 30", states Inserm, the French national institute of health and medical research.
“Everyone knows someone with MS, if not themselves”, Piccolo says. According to her, there are 130,000 sufferers in France and nearly a thousand suffering from the disease in Luxembourg.
Piccolo says she is determined to fight. “Society’s outlook must change. People don’t understand that which is invisible. Unless it is explained to them.”
She lauds her employer for their understanding during her illness. “They have always supported me, accompanied me. They have made adjustments so I can continue to work in spite of my disability and illness, from the start.”
Piccolo also thanks her colleagues for their participation in a solidarity action that allowed her to raise €50,000 over three months to pay for a stem cell transplant in Moscow. This did improve her condition for a while, but the treatment was stopped with the advent of Covid.
There are treatments available to slow down the disease, as well as clinical trials to help fight the illness – such as an innovative trial involving the Luxembourg Institute of Health (LIH) and the Luxembourg Institute of Science and Technology (LIST). But Piccolo, who is also president of the Sclérolife charity in Luxembourg and of Slérolife France, says she is determined to find a remedy.
Piccolo hopes to initiate a ‘SEP Action’ weekend [SEP stands for ‘Sclérose en Plaques’, the French name of the illness], like Sidaction or Telethon, to raise funds for charity “all weekend, with the aim of stopping the disease and finding a cure for the myelin sheath”.
She says she is not doing this for herself, but for everyone affected by multiple sclerosis. “Children, young adults, young mothers, anyone with a diagnosis. I have always said I will get rid of it, and I shall. But it takes money.”
Piccolo is also very much aware of the need for solidarity. “On my own, I’m nothing. So if you want to join me, if you’re interested in curing MS, jump on the train with me.”
To contact the Sclerolife association, send an email to support@sclerolife.com.
