It all started with fatigue. Turns out I have the autoimmune disease myasthenia gravis

I went to the hiking and boating section, which was physically quite demanding, so I attributed the excessive fatigue to the high workload.

It got worse in college when I started to feel exhausted for no reason. It was already clear that this was not normal, so I visited the school doctor. Without explaining what was actually wrong with me, he prescribed me medicine, after which I felt better for a while.

My battle with the disease

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But soon it came back and it was even worse. I couldn’t climb four flights of stairs, I suffered from double vision, it was hard to breathe. I consulted a neurologist and he diagnosed me with myasthenia gravis.

I couldn’t even cry

He told me that I would have to limit everything, that it would be difficult for me to get married and that I would never have children. You really don’t want to hear this at eighteen. Stress made my symptoms worse, the symptoms of the disease destroyed me, and I was getting into a vicious circle. I couldn’t even cry, because if my muscles stopped working at that moment, I would have choked.

I underwent operative removal of the thymus gland and was given high doses of corticoids to suppress the activity of the immune system and other drugs to prevent blockage of muscle transmission. However, I never completely got rid of the symptoms.

I didn’t give up

My condition is getting better and worse. Twice I even went through a so-called myasthenic crisis, which is a condition where your muscles give up completely and you are directly threatened with life. I had to slow down, be more careful with myself, observe myself more.

Now I know when I have to stop so I don’t fall, what to do when my muscles stop working, and how to alert those around me.

It happened to me several times that I was unable to move my leg, I fell and could not speak. But passers-by thought I was drunk. Despite the doctor’s initial verdict, I didn’t give up even the dream of having my own family, I got married and gave birth to a son. I am used to not giving up, so after the initial shock, I told myself that I will do everything my body allows. That I must not feel sorry for myself and wait for a miracle.

I cannot imagine life with this disease without the support of those closest to me, they stand by me through thick and thin. I work as a teacher’s assistant at a primary school and at the same time I am on the committee of the patient organization Mygra-cz, which helps people with this disease.

I know what it’s about, I’ve been battling myasthenia gravis myself for over forty years, so I have something to tell them and can share my experience.

Myasthenia gravis

It is a rare neuromuscular autoimmune disease in which there is a disturbance in muscle excitability. Patients are unable to control them and have problems with movement, it is difficult for them to lift an arm or a leg, their eyelids droop, they may have difficulty speaking, but also breathing, for example due to weakening of the diaphragm muscles.

The risk factor is age (between 20 and 40 and then 60 and 80 years) and the occurrence of the disease in the family. Patients and their relatives can find help at website patient organizations.

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