Celine Dion has candidly shared her experiences living with stiff person syndrome (SPS), a rare neurological condition that causes debilitating muscle stiffness and spasms.
Diagnosed in 2022, Dion has had to postpone her tours and navigate the challenges of this incurable illness. Despite the obstacles, Dion remains determined to live a full and active life. She is undergoing intensive physical therapy and working with a medical team to manage her symptoms. Dion’s resilience and determination serve as an inspiration to others facing chronic health conditions.
In an interview with Vogue France, Dion spoke about her struggles in the early stages of diagnosis: “At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?” She continued: “Life doesn’t give you any answers. You just have to live it. I have this illness for some unknown reason. The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.
“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again! … I have this strength within me. I know that nothing is going to stop me.”
SPS is a rare progressive neurological condition. It affects twice as many women as men, and it is frequently associated with other autoimmune diseases like vitiligo, thyroiditis and diabetes. Scientists aren’t sure what causes the disorder but research suggests it might be the result of a faulty autoimmune response in the brain or spinal cord.
Symptoms of SPS include stiff muscles in the arms and legs, and spasms. Those with the condition are also often more sensitive than usual to noise, touch and emotional stress, and can experience muscle spasms as a result. This might be harmful for their mental health and make them afraid to leave their homes because they don’t want street noises or smells to trigger their bodies.
Over time, SPS sufferers might develop hunched or abnormal postures, and be too disabled to move or walk. Their reflexes will also be affected, which could lead to those with the condition frequently falling, unable to catch themselves.
SPS is often misdiagnosed as other neurological diseases because it is so rare. The misdiagnoses might make healthcare professionals think the patient has Parkinson’s disease, multiple sclerosis anxiety or phobias. A blood test is used to get a definitive diagnosis, which looks at the glutamic acid decarboxylase (GAD) levels. Those with the condition have higher levels of GAD than normal. The doctor will also look at the level of antibodies in the blood, as those with SPS will have elevated levels.
Dion’s openness about her diagnosis and journey with SPS raises awareness about this rare condition. Her story sheds light on the challenges and resilience of those living with chronic illnesses and inspires hope for a better quality of life.
