Today is the 2nd of June the European Day for autoimmune myasthenia gravis, a disease which has a considerable impact on the social and family life of patients. The testimony of Jihane, 43, diagnosed in 2019.
“ It’s tiring to be tired!“. Four years after being diagnosed with his autoimmune myasthenia, a dysfunction of neuro-muscular transmission leading to abnormal muscle fatigability, Jihane, 43, carries his symptoms like a burden that ruins his life. ” I have difficulty breathing on the slightest exertion, I struggle to walk, climb stairs, even simple things like putting away the dishes, brushing my teeth, combing my daughter’s hair, require immeasurable effort “.
It was in 2019, the day after her delivery, at the age of 39, just after a session with a physiotherapist, that the young woman saw the first sign of the disease appear, ptosis, a falling eyelid. ” I sent a photo of my face to an ophthalmologist friend saying to him ‘I have a dirty head’, he immediately replied that he was thinking of myasthenia “.
“I was lucky to have a very quick diagnosis”
In the emergency room of the hospital where she then went immediately, she was given the “ice cube” test. “ When you put an ice cube on the eye, in case of ptosis, it makes the eyelid go up “says Jihane. After this positive test, she is referred to a neurologist. ” It happened very quickly, I was lucky to have a very quick diagnosis “.
On the other hand, no explanation is given to him on the causes of his myasthenia. “ We do not know if there is a link with pregnancy or childbirth, we do not know much about this autoimmune disease, just that it often occurs between the ages of 20 and 40 for women “.
Very quickly, the symptoms have an impact on the professional life of Jihane, an executive in the public service. “ In the morning, after taking care of my daughter and making the trip to my work, I had already started some of my energy! From the first meetings, I was tired, my voice was becoming nauseous “.
Fortunately, in her personal life, she can count on her spouse. ” He was really great, he was often there since his job allows him to have flexible hours… But I who am very independent, I found myself dependent on someone, it’s very difficult “.
Immunosuppressive treatments
Regularly monitored by a neurologist, the patient is placed on immunosuppressants. ” With these treatments, we catch everything lying around! With a little girl, she brings everything home, she’s a walking bacterium!“. As a result, she was hit for the first time by Covid and found herself in intensive care.
If she overcomes this infection, she comes out even more weakened. ” When I catch a disease, it’s not minor. After the Covid, for six months I did not leave my house. “Several months later, she was once again contaminated by the Covid virus and also, during the winter of 2022, by a strong flu. Since then, she has been off work.
But even at home, nothing is easy for Jihane. ” With my daughter who is 4 years old, her father cannot do everything, you have to shower her, dress her… If I do something for her, I no longer have the strength to do it for me “.
Today, the young woman is being treated with a new protocol based on biotherapy. “ I’m still tired but I feel less muscle exhaustion, especially in the legs. So far, it’s giving good results, we’ll see… “.
A disease with more intimate consequences
Yet many of the symptoms are still there. ” I’m afraid to go out, to go to Paris, I could go there but I’m not sure I can go back! And then beyond physical fatigue there is also neurological fatigue, and vision problems, we can no longer stay focused to read a book, it’s all that weighs in the daily life “.
Jihane also does not want to hide other more intimate consequences of her illness. ” It’s something that we don’t often talk about with myasthenia, but it affects all the muscles, including those of the sexual organs, it upsets the life of a couple, fortunately, for me there is a lot of love… It’s is an invisible disease, no one sees me limping or moving around in a wheelchair, but it is a vicious disease, very disabling “.