“It’s up to us to say what we need…” Valadou looks at the “disease with a thousand faces”

Sandrine Jourdan, coordinator of the Valadou support and respite platform in Montézic, is preparing to say goodbye to her colleagues, loved ones, families and patients, without waiting for World Multiple Sclerosis Day, set for May 30. Diagnosed after “two years of wandering,” says the woman for whom “my job was to help others, today, I am in a position to be helped.” Sandrine Jourdan came to present this event in a wheelchair “to make the voices of patients and caregivers heard. My job was to help others,” and confided: “A lead weight has fallen on me, we are sharing with her body, I am still in the process of accepting it.”

An open day to, first of all, talk about it. Free speech, advise, alert the public authorities about this disease “with a thousand faces”, as the symptoms and phases differ from person to person.

After devoting her life to patients and loved ones, Sandrine Jourdan lives with this autoimmune disease of the central nervous system that can affect the entire body. “Emotional shock, stress, fatigue are among the causes. The Covid vaccination may also have contributed,” says the woman who says she “was relieved when she was finally diagnosed with the disease.” Because many patients like her initially hear talk of “burnout.” The reality is quite different: discomfort, loss of balance, muscle pain, dizziness, foggy vision, tingling, suffering from heat, heavy treatment with corticosteroids with side effects, fragility at the slightest bacteria, etc.

Taking into account at work

This shows how long the road still is. “We need to raise awareness of the disease in the workplace, educate because most of the symptoms are invisible. Many people are treated like lazy people when they are sick.” Politicians, the world of work, the world as a whole, must become aware of this and show empathy. For the one who “no longer lives life in the same way, enjoys every minute”, as the pain makes “every movement heavy” including “physiotherapy sessions to maintain autonomy”, this day must also reverse the trend. “It is up to us to say what we need and not to lay down specifications by people who are not affected.”

A day in someone else’s shoes to realize that the disease can affect anyone. Sandrine is getting ready to say goodbye, to move to Rodez to be closer to the eleven practitioners and the care services. “We need to change the way we look at disability, there isn’t even a support group for young people,” notes the woman who nevertheless considers herself “lucky” because she is supported by her husband René, “who she asked to leave and who stayed,” the love of her two children and having the financial means to cover the smallest costly tasks like opening a business.

“The President of the Republic said during the Paralympic Games that the wheelchairs will be reimbursed, but we also need someone behind to take care of them.” The games are over but the fight has only just begun. Sandrine Jourdan keeps the hope of the rising sun, with a project, in particular, to create a day center for young people. To make tomorrow less hard and burdensome for them so that they can have their lives ahead of them.