Manon, 28, has been living with an unknown illness for twelve years. Between the age of 16 and today, she had several meningiomas and had to undergo no less than five brain operations which left her epileptic.
Manon has been living with the disease for twelve years. It’s also been twelve years since she really knows what evil is gnawing at her. It all started when she was 16 years old. “It was a Wednesday. I woke up with a massive headache. My attending doctor did not understand what I had and advised me to go to the emergency room as quickly as possible to have an MRI,” recalls the young woman, now 28 years old. She went there the following week. “The lady at reception sent me home at first… until I literally fell asleep in the hospital waiting room.”
Five operations in ten years
Seeing the scene, a doctor ordered a CT scan to be carried out on Manon. This will reveal a mass the size of a golf ball lodged in the right lobe of his brain. A benign tumor otherwise called a meningioma which, without treatment, has become inflamed. Faced with the emergency, an operation was immediately scheduled. A long rehabilitation followed. But Manon was not out of the woods. Between the ages of 16 and 28, the young woman was operated on five times for multiple tumors. “That’s on average one operation every two years,” she comments. “The neurosurgeon removed up to eight tumors in one go. Then, in 2022, he told me that he could no longer operate on me, because an additional operation risked irreparable damage to my skin. He didn’t want to take the risk that I wouldn’t heal anymore.” Operations being prohibited, the same year, Manon turned to radiotherapy. The treatment lasted two months between November and December.
Illnesses find a name when several people have the same symptoms. However, I am the only one on Earth to have had repeated meningiomas, without explanation.
Since then, no new tumors have appeared. However, the young woman is still followed annually by her doctors, who still do not explain what she is suffering from. “Diseases find a name when several people have the same symptoms. However, I am the only one on Earth to have had repeated meningiomas, without explanation. A sample of my blood was sent to the United States to find similar cases, but no one is like me,” she says.
Difficult, for the moment, to say that the young woman is completely out of the woods. Additionally, the surgeries she underwent resulted in the formation of epileptogenic zones in her brain. In other words, in addition to having to manage possible new meningiomas, she became epileptic.
Learn to live with the inexplicable
Since the first headaches, it is not so much the operations that have been difficult for Manon to bear, but rather their consequences. “Seeing these scars, waiting for my hair to grow back, it was all very hard for the teenager I was and for the young woman I was becoming,” she recalls. “Monthly medical appointments and recurring operations also complicated my life, preventing me from attending classes properly and depriving me of part of my education.” But above all, what the young woman had the most difficulty with was the two months of radiotherapy. “I met doctors who had lost all empathy, all humanity. Doctors who announced quite naturally, as if it were something normal, that I was going to lose my hair, and who asked me to stop working throughout the treatment. During this period, I gave up.”
Every month spent without a crisis is a victory. Every MRI passed without a tumor is another. I consider myself lucky not to have given up and to continue fighting.
As mentioned above, for a little over two years, no new tumor has reappeared in Manon’s brain. However, her life has not returned to that of a young woman without problems. At 28, she is forced to accept her condition, hoping that no meningioma will ruin her life again. She is also learning to live with her epilepsy. “When a crisis occurs, I am disappointed, but I have to bounce back and not let myself be defeated,” she comments. “Every month that goes by without a crisis is a victory. Every MRI passed without a tumor is another. I consider myself lucky not to have given up and to continue to fight, with or against the doctors, depending on those I meet.”
What to do if someone has an epileptic seizure?
According to Manon, when we witness an epileptic attack in a person whose illness is known, it is not necessary to call 112. You simply need to have the right reflexes depending on the situation.
On its website, the French-speaking Belgian League against Epilepsy specifies that in the event of an attack without convulsions, the risks of injury or respiratory complications are low. In such a situation, you must be present, ensure the safety of the epileptic person by restricting their movements and keeping them away from any dangerous situation (street, stairs, fire, knives, for example), and reassure them. After the crisis, you must stay by this person’s side, who may take time to recover from the crisis.
In the event of an epileptic attack with convulsions, the reflexes should be similar to the previous one. You must let the crisis take its course while ensuring that dangers and the number of people around the patient are kept away. As the risk of injury is greater, care must be taken to ensure that the safety of the person in crisis is ensured by placing a cushion under their head, removing their glasses, loosening their clothing and moving dangerous objects away. It will then be appropriate to reassure this person by staying by their side.
In both cases, it is important to lay the epileptic person having a seizure on their side. This is called the side safety position (PLS), which makes breathing easier.
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