Since 2009, World Multiple Sclerosis Day has been established for May 30. Audrey Huré, 26-year-old Cherbourgeoise, suffers from this incurable disease. She testifies.
Published on May 30, 20 at 12:34
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Since 2009, the date of May 30 has been chosen as World Multiple Sclerosis Day. In France, around 110,000 people suffer from this incurable disease, with a proportion of 1.7 women for 1 man, and 5,000 cases are diagnosed each year.
Audrey Huré lives in Tourlaville, delegated municipality of Cherbourg-en-Cotentin. At 26, she has suffered from multiple sclerosis for six years.
She confides in his illness, and on the difficulties in establishing the diagnosis.
Read also: Covid-19: In Cherbourg, the hospital wants to double the testing capacity
The first troubles
“I had my first push in 2014, at 20 years old. According to my doctor, it was depression. I was constantly tired, I was not walking properly: it was the same feeling as a drunkenness. This push made me vomit, weight loss weighing almost 10 kg, I was skeletal. I also had the trembling eyes when I looked on the right, tingling along the column with each bending. “
Misunderstanding
“After three months of discomfort, the push has passed. I didn’t feel helped, alone and in ignorance. My body betrayed me. In February 2018, a new surge: the doctor again told me that depression was responsible for my condition. After several meetings, insistently obtained, with the family by my side, he decided to send me to the emergency room. This time I couldn’t line up one foot in front of the other effortless and focused, I could fall at any time. I hardly felt the ground under my feet anymore. I was seeing double and it was blurry. I no longer felt anything on my skin, from the upper body to the feet. “
Exams
“When I got to the emergency room, they listened to me right away. An intern brought me back the next morning to see the on-call neurologist. He asked me a lot of questions, made me gestures, checks. Then I had to come back Monday morning to the hospital to see another neurologist, who ended up saying to me: I want a full checkup for her. The same day, I performed a spinal MRI (NLDR: to obtain images of the spine). The next day, lumbar puncture and eye exam with electrodes on the head (PEVs). The following week, I did a brain MRI. “
The diagnosis, finally
“The neurologist hesitated between two diseases: multiple sclerosis and Devic’s disease. My results were sent to Caen and Lyon and the verdict fell a month and a half later. We were in the neurologist’s office on April 4, 2018, with my spouse and my mother: It is a relapsing, recurrent, severe and aggressive multiple sclerosis. At that time, I am 24 years old … I thank my neurologist who took me seriously and did all the exams in a week and a half. “
The treatment
“I did another push shortly after, I was in a wheelchair for three days. Fortunately, now that I have been diagnosed, I can be treated for flare-ups. cortisone infusion, to get better as quickly as possible and without consequences, luckily. To slow the disease down because it is incurable, I have an infusion treatment once a month, Tysabri. It’s a heavy treatment, which tires me a lot the same day and the next day. I have an MRI every six months to check if the treatment works as well as a check for the JC virus. “
Living with illness
“I did not react after the announcement of the disease. I live it very well, I’m so relieved to know what’s going on, to plan, to do my best, to finally have a name for my troubles. I will never let go no matter what. There are always worse than me. Today I’m fine, I’m walking well, I’m laughing, I’m living. I’m just a lot more tired than before, and when I make an effort, my body makes me pay for it with excruciating pain for two or three days. I wish a lot of strength and courage to all those affected like me, as well as the caregivers, the incredible caregivers in the hospital and all the others. Life is good, time goes by and nothing stops it so you too, don’t stop fighting. “
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