[ad_1]
Emotional elevator. For two years, Pauline Messier is installed in a sort of roller coaster. A game on which his life unfortunately depends. Damage to a amyotrophic lateral sclerosis (SLA), also called Charcot diseasethe 22 -year -old young woman from Chambly (Oise) was diagnosed at the age of 20. At the time, his life expectancy did not exceed five years. Today, Pauline has not lost an ounce of her smile, and is in great shape. All this thanks to a treatment which she is no longer sure of enjoying in the future. A decision that once again puts its life expectancy on the carpet.
His treatment called into question
This last emotional fall took place last October. “”My parents came across an Arsla petition (Association for ALS Research, Editor’s note) where the reimbursement of treatment was mentionedrecalls Pauline. It is total misunderstanding. I expected everything except that.The questioning of this treatment, Qalsody comes directly from the High Authority for Health. In October, she refused her request for early access, as explained here. A very heavy decision for the fifty patients concerned by the reimbursement of this treatment, which would cost them € 30,000 per month.
First concerned, Pauline saw this decision as a real injustice. “”First I am told that I will die, I had to accept itshe traces. Then, I learn that a treatment with hope exists. It is confirmed in July, when my neurologist tells me that the disease no longer evolves. It was a great victory for me. And a few months later, I learned by this petition that the treatment is called into question. I never imagined the fact that we could question it …»»
“Without this treatment, I would already be dead”
Several feelings intertwine in the head of the young woman: frustration, anger, indignation. Emotions she would like to do without, in addition to the disease. “”In 2022 I was condemned to die because of ALS, today it is perhaps because of a decisionshe is sorry. It’s hard. I am no longer master of my life, but he is someone else. I would like them to look at me in the eye, and that they tell me “We call into question a treatment that keeps you alive”… ”
Because the young woman is sure and certain, without this treatment, she would no longer be of this world. “”We can base ourselves on the level of neurofilamentsshe explains. The pathological threshold is 20 picograms per milliliter. I was 408, it’s huge. Without this treatment, I would already be dead. My father’s cousin was diagnosed at the age of 30. She left in nine months.»»
The fight of hope
Today, Pauline still achieves her bite that keeps her alive, every month in Pitié-Salpêtrière, in Paris. But until when? She has no idea. “”I have the impression of being again between life and death, I don’t know if I will live or die … I don’t even know if I have to spend all my money or saveShe jokes.
Despite everything, the Camblysian continues to positivate. The disease having spared her thanks to the famous treatment – she cannot “just” walking – Pauline intends to carry her voice and that of other people concerned to make their fight heard. “”When we are one of the minorities that are not listened to, we cannot stay there to do nothingshe says. It is up to us to show that we are there, to raise our voices when we still have one, to say “I’m here, I deserve like you to live”. “
In the depths of her, Pauline hopes that the High Authority for Health will return to her decision. Because for her, to question the treatment is to show the laboratories that it is no longer worth continuing research to fight against ALS. And as this treatment stops the progression of the disease, it gives researchers time to find a remedy. And especially hope to the sick. “”If a remedy is found in seven years, I could perhaps restart, Dream the young woman. But if we stop my treatment, I would not be there to take advantage of it.»»
Continue to live before you think about dying
Well installed in its roller coaster, Pauline continues to bite life to the fullest. Travel abroad, concerts, parachute jump, she continues to live her wildest dreams. Thanks to strong parents, and a dad “supermanFor her. In his phone, his “list of things to do before dying” decreases little by little. But it still remains so much to do: cross the Atlantic on a sailing boat, watch the stars in a large observatory, or even return to the Bollaert stadium to see the RC Lens. Until when does she have to achieve all of this? It is the big stranger at the moment.
[ad_2]
Source link
