Because of a rare disease, she was afraid to cry

She was often very tired, but because she went to the hiking and boating section, she attributed everything to above-average physical performance, recalls the teacher’s assistant at an elementary school and a member of the committee of the patient organization Mygra-cz, which helps people with this rare autoimmune disease.

During this, the body creates antibodies that prevent the transmission of impulses from the nerves to the muscle. People who suffer from a disorder of the nervous system are weakened and unable to control their muscles, approximately 10 to 15 percent of them the disease is life-threatening. However, those around them often think that they are just lazy.

The disease cannot be cured, the manifestations can only be suppressed. The disease affects 2,500 to 3,000 people in the Czech Republic.

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When Miriam’s condition worsened, she visited the school doctor, who, without explaining what she was suffering from, prescribed medication that made her feel better for a while. But soon the fatigue returned, more intense, and more difficulties were added. “I couldn’t even walk up four flights of stairs, when I covered myself with the duvet, it felt like it weighed a ton,” she describes.

After a series of examinations, the neurologist diagnosed MG, when patients are unable to control their limbs and have problems with movement, it is difficult for them to lift their arms and legs, their eyelids droop, they may have difficulty speaking and breathing.

“My world collapsed,” she admits of how she felt when she learned the diagnosis. “I couldn’t even cry, because if my muscles stopped working at that moment, I would have choked,” she recounts.

She dropped out of college and gradually learned to live with the disease. She got married and gave birth to a son. She underwent operative removal of the thymus, which affects the immune system, and the doctor prescribed high doses of corticoids to suppress the activity of the immune system and drugs to prevent muscle transmission blockage. She never got rid of all the symptoms.

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Twice she also went through a so-called myasthenic crisis, which is a condition where the muscles stop working completely and the patient’s life is in direct danger – he can suffocate due to the weakening of the diaphragm.

Now he knows when he has to stop to avoid falling, what to do when his muscles give up, and how to alert those around him. It happened several times that she couldn’t move her leg, she fell down and didn’t have the strength to get up, she couldn’t speak.

The article is in Czech

Tags: rare disease afraid cry

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