“My parents didn’t see me smile for almost ten years. It may seem like a small thing, but it’s a lot”

When the moment of the meeting arrives, we feel a little feverish. “I’m all stressedshe confirms, before continuing – as if to apologize – even if Today, my illness is not too visible. My face looks ok. I slept well. Sometimes my smile is a little frozen. It must be said that I didn’t smile for almost ten years. Yes, my parents haven’t seen me smile during all this time, it may seem like a detail, but it’s a lot… It’s only been a year since I smiled normally again. That is to say since we found the treatments which mean that I am now stable and, as a result, I am almost asymptomatic.”

Manon in a relationship with Denis: illness does not prevent them from making plans together. ©Bernard Demoulin

Although, at first glance, the young woman appears to be in great shape, the illness is nevertheless there, in the shadows, as evidenced by the pill bottle lying on the dining room table. “Every Thursday, I fill out my weekly diary. I have too much medication, if I don’t do this I’ll get lost”. If she doesn’t havemore than a good sixty tablets” to take per week, there was a time when she had to swallow nearly 130!

“You don’t call an ambulance for a simple stomach ache”: that same evening, two masses – 400 and 500 g – were extracted from Sabrina’s abdomen

Six months before diagnosis

Manon was 17 when she learned that she suffered from myasthenia gravis, a rare autoimmune neuromuscular disease that manifested itself in various symptoms. “The first signs came after a heavy fall from a horse. I started to feel a lot of muscle loss in my legs and arms, she remembers. The doctors thought the accident was responsible for my blockages. Then I had a brain MRI to see if there was a brain tumor..” The exams don’t reveal anything. “I then had very serious swallowing problems.continues Manon. During the consultation, the ENT – whose name I will not mention – wanted to convince my dad that it was all in my head, that I was crazy. He claimed that I was doing all this to myself and that if I persisted in not eating, I was going to end up in a psychiatric hospital with a stomach tube. This illness not being visible, I was lucky that my parents always believed and supported me.”.

The symptoms don’t stop there. A few weeks later, while wanting to ride her mare, the then teenager reached a new stage in these ailments for which we still had not put a name. “The disease had affected my diaphragm and I could no longer breathe. We went urgently to my general practitioner who noted all the symptoms that had appeared since the beginning: muscular weakness in the limbs, swallowing problems, breathing problems, face freezing, double vision, eyelids drooping, etc. He told me he thought he knew what illness I was suffering from. While remaining doubtful because, in his 40-year career, he had only had three cases of patients suffering from this pathology, but at much older ages.”.

Even before having the results of the blood test, the electromyogram immediately carried out by the neurologist will confirm the diagnosis put forward by the attending physician: myasthenia gravis. “When it is more ‘sympathetic’, myasthenia gravis is localized to one part of the body. Unfortunately, in my case, it is widespread. I have all the symptoms”. It therefore took six months before the correct diagnosis was made. And with it, a deep feeling of injustice: “Tens of thousands of times, I asked myself the question: why me? And why me at that age?”.

Since the age of 17, Manon has suffered from a rare autoimmune neuromuscular disease. ©Bernard Demoulin

“I naively thought: illness, treatment, cure”

At this announcement, “we didn’t know what we were getting ourselves intoremembers Manon. I thought a little naively: illness, treatment, healing. I didn’t know about chronic illnesses. To put it simply, it was explained to me that, when you want to move a limb or any muscle, the brain sends information. When you have myasthenia gravis, the immune system creates antibodies which will somehow modify the receptors in the muscles, which no longer allows the information to attach correctly to it.”.

From that moment on, the medical appointments kept coming. The teenager then undergoes a thymectomy, a surgical procedure to remove the thymus, an organ located in the upper chest which produces lymphocytes, stores blood cells and destroys old ones, filters the blood. “This gland plays an important role in children to defend against diseasesexplains in her own words the one who has since become a nurse. She is then supposed to fall asleep. In my case, the thymus woke up at 17 – we don’t know why – and it started producing these famous antibodies. For myasthenia gravis, normally, in a third of cases, this intervention is sufficient and allows you to become asymptomatic even if you are not cured.. For another third of cases, the intervention helps enormously but they continue to take medication. In a final third of cases – and unfortunately I am in this third – the intervention is not enough at all and medication is essential..”

“One Thursday, I learned that I have 95% cancer cells in my bone marrow. The verdict is final”

“At that moment, I wanted to end it”

In 2017, Manon had a crisis. “Myasthenia gravis is a very capricious diseaseshe comments. Unmanageable in the sense that you can feel good and, in the next half hour, be very bad. That day, I could no longer breathe, no longer swallow, no longer speak… I signaled to my mother to call the ambulance.” Clearly moved, Manon continues the story in a more shaky tone: “At this moment, after four years of suffering, I wanted to stop breathing myself. I wanted to end it because it was no longer possible. I found that life was not cool: I was only going back and forth to the hospital, I couldn’t eat the way I wanted, couldn’t do sports, I couldn’t smile anymore, my vision was blurry. all the time…”

What follows: Manon is intubated and plunged into an artificial coma for six days during which she will benefit from five series of plasmapheresis (process of separation of plasma and blood, by centrifugation or filtration) in order to remove a large part of the antibodies responsible for myasthenia gravis. “After that, I felt very well, but unfortunately I had relapses and that’s when I was declared drug resistant, meaning I didn’t respond to any treatment.

Words for Maux Manon Delporte, who suffers from myasthenia gravis
For a year, Manon’s condition, suffering from myasthenia gravis, has been stable. ©Bernard Demoulin

Today, and for the past year, Manon has received infusions of monoclonal agents every two weeks which allow her to live more or less normally. Even if everything remains relative: “These monoclonal agents weaken the blood-brain barrier, which increases the risk of meningitis. And that’s what I did last July, with a life-threatening condition. Since then, I have been on antibiotic prophylaxis in addition to cortisone and immunosuppressants. I also have a prophylactic antifungal”. Hence the sixty tablets per week – “it makes a nice little cocktail” -, inevitably with side effects.

There are other collateral effects. “This illness has impacted my life but also my personality. I went from a very sociable person to a withdrawn person”, she regrets.

Nurse, a vocation born during her hospitalizations

If Manon has been a qualified nurse for 3 years, specializing in the operating room – “because it is the most sterile environment and therefore safe for me” -, It is not a coincidence. “Until I was 17, I was in perfect health and the medical world was unknown to me. When I got sick, I met two types of nurses: those who love their job and who therefore made me want to go into this profession, and those who are bitter and who instead made me want to replace them”, she said, laughing.

Today, despite taking medication, Manon believes she is living “relatively normally”. While “for 9 years, the illness and I could not coexist at allshe tells usI strangely had a very bad experience of no longer living with symptoms, as has been the case for a year. Because I had learned to rule my life around the symptoms. I was a little lost. Now I’m slowly starting to do sports again, running and cycling. I just have to listen to my body and the limits it imposes on me mainly in terms of breathing. Although I no longer really have symptoms, I still remain a sick, immunocompromised person. The 65 medications I take per week remind me of this, even if those around me sometimes tend to forget it. I’m good today, it’s true, but for how long? Nobody knows. What I do know, however, is that I would be unable to relive the nine years I was unwell. What I am about to say may be harsh, but we talked about it with my family and with the neurologist, if I had to relive what I experienced, euthanasia is possible…” Silence and amazement at hearing these words from the mouth of a young woman who nevertheless gives the impression of having her whole life ahead of her.

Words for Maux Manon Delporte, who suffers from myasthenia gravis
Manon is a nurse, a job she loves. ©Bernard Demoulin

On edge, she explains, her voice trembling at times and her eyes red, even if she says to herself “extremely good at hiding her emotions and when things aren’t right” : “Today, I live permanently with a sword of Damocles hanging over my head. I’m anxious about returning to the life I had before, about having a crisis, a new meningitis… I know that I won’t make up for the nine years I spent with the illness, but I want to make the most of it now. In ten years, I have never gone on vacation except once when we managed to calculate the plasma exchanges so that I could go see my brother – with whom I am close – in Australia. Last year was the first year I was able to go on vacation again, taking all the necessary precautions and, unfortunately, I got meningitis”.

But that doesn’t stop him from still having a head full of projects with Denis, who has been at his side for three years. “Travel, marriage and, in a few years perhaps, a child but it will automatically be a risky pregnancy. In the meantime, we have little cats and that too is still cool”, smiles Manon.

The logo of our series
The logo of our series “Words for evils” ©Raphaël Batista

Through “Words for Evils”, The Free has chosen to give voice to people affected by various illnesses, both physical and mental, common or rare. Meetings which aim to understand their daily lives, their difficulties and hopes, to share their outlook on existence. It is also a way of reminding us that no one is safe from these accidents of life. This series can be found every other Monday on our site.

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