Myasthenia gravis is an autoimmune disease that affects the connection between nerves and muscles. If it is often limited to an ocular form, its more serious forms are very disabling, as shown by the testimony of a patient, Jihane, a young mother.
- The first symptom of myasthenia gravis, an autoimmune disease, is an eye disorder caused by a “falling” eye.
- The disease is often linked to an enlargement of the thymus, a gland in the upper chest.
- Patients suffering from myasthenia gravis can be very disabled in their daily and professional lives.
“I always have in mind the hope of returning to the way it was before…”. At 44, Jihane is not throwing in the towel in her fight against her illness, myasthenia gravis, a neuromuscular junction disorder. But the fight is difficult: “I have all the symptoms, swallowing problems, difficulty breathing, all daily activities become complicated”explains this mother, a civil servant in a design office of the Ministry of the Interior.
“I saw my eye falling out in a mirror”
It was in 2019 that the first signs of myasthenia appeared in her. “I had just given birth and while I was doing physical exercises, I saw in a mirror my eye falling out, my face completely distorted… As I was a new mother, I put it down to fatigue but two days later, it came back.”
She then sends a photo to a family member who is an ophthalmologist with a concise message: “I have a bad face, look and tell me what you think.” Response from the healthcare professional: “I have the impression that it is myasthenia gravis, I will send you a prescription straight away so that you can go to the hospital.”
The ice cube test to diagnose myasthenia gravis
And there, the doctors do the ice cube test on Jihane. A practice which consists of putting the eye in contact with the cold. If it rises, this means 95% that we are in the presence of myasthenia gravis, an autoimmune disease of which the ocular form is in fact one of the first manifestations. And the test is positive. She was then referred to a neurologist but before consulting, she found out about this disease. “Myasthenia gravis is not necessarily presented as something very serious, I read that it was manageable, that we could live with it without problem, but we do not always say that it can lead to fatal respiratory distress !”
While the young mother, apart from the changes visible on her face, does not yet notice any “big consequences” on his daily life, the specialist confirms the diagnosis and prescribes other neurological examinations. “These explorations showed that there were no repercussions on the muscles of my arms and legs and after these results, I had the feeling of not being taken seriously…”. But after a chest scan, the verdict falls, more worrying this time: “I was told that I had a thymic mass (non-cancerous tumor of the thymus, a gland located in the upper chest), often diagnosed in association with myasthenia gravis.”
“I realized that myasthenia gravis was not known at all”
Surgery, radiotherapy, more serious care followed for Jihane in the midst of the Covid-19 pandemic. “After these interventions, like everyone else, I remained locked up at home for several weeks and then I returned to work… and in April 2021, I was contaminated by the virus… that was the beginning of hell !”
“Like many other patients, I had difficulty breathing. But I was really very out of breath, I felt a huge weight on my chest.” Jihane is admitted to the emergency room for the first time where she is placed in intensive care with oxygen. Following new crises, she found herself in the same situation three more times. “I went to two different hospitals and each time I was sent home… that’s when I realized that myasthenia gravis was not known at all.”
Treatments for myasthenia gravis act on the connection between nerves and muscles
But above all, these “covid” episodes translate for Jihane into an outburst of the disease. “As I was treated with immunosuppressants, I was ultra-susceptible to all infections. With my two-year-old daughter, I catch everything that is lying around but three times more complicated! A nasopharyngitis knocks me out, I I am regularly on sick leave…”
After several trials of basic treatments –“With each new medication, I said to myself ‘this is going to get better’, but in fact, it wasn’t getting better…”– Jihane is treated with pyridostigmine, a molecule which acts on the connection between nerves and muscles, and with corticosteroids. “It keeps me going, but despite everything I now live in slow motion, not a month goes by without me having to take sick leave, just since December 2023, I have already had to interrupt my professional activity three times”she says.
Myasthenia gravis, a disease characterized by seizures
Obviously, the consequences of his illness began to impact his life in a significant way. “Some mornings I get ready and, when I reach the door of my house, I can no longer breathe… And there is fatigue, I discovered what it was to cry from fatigue! Plus, for those around me, it’s difficult, my partner and my daughter don’t understand when they see me struggling to climb a flight of stairs when the day before I had no problem.” It is also difficult to reconcile such an uncertain state of health and a professional life: “At work, they see that I am normal when things go well and they wonder about my sudden absences, I am starting to be excluded from certain files that I was following.”
Myasthenia gravis is in fact characterized by crises. “The alerts are always the same, swallowing and breathing problems, but there are as many signals as there are forms of myasthenia gravis, everyone experiences their illness differently, some patients are in wheelchairs while others live almost normally. But It only takes a little thing for it to knock them down. With this illness, unless you live in a bubble, it’s complicated…”
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