About 9000 people with myasthenia live in Poland. Men rarely get sick, most of the patients are young women who do not have the opportunity to start a family, give birth to a child or work. People around them often refer to them as spoiled princesses or malingerers. - We want to show the true face of myasthenia gravis, emphasizes Anna Wolska from Bydgoszcz, founder of the Kameleon Association of People Suffering from Neuromuscular Diseases. She knows what she’s talking about because she’s sick herself.
Alexandra Zalevskaya-Stankevich, “Wprost”: Do you often hear from people around you that you are a simulator?
Anna Volska: Fortunately, less and less often, because my relatives, friends, and colleagues know about my illness. On the other hand, I know from other women that many of them face stigmatization. Even the family accuses them of being lazy. The paradox is that very often we do not see the disease. Until our eyelids or head droop or we begin to mutter - for this reason, people with myasthenia gravis are often perceived as drunk. On the other hand, if we have a good time, dress nicely and make up, we look attractive.
What’s under this mask?
Myasthenia gravis is an autoimmune disease characterized by fatigue and fatigue of the striated muscles and persistent, chronic fatigue. This takes away our strength and desire to live, it is because of these symptoms that we often need the support of a psychologist or psychotherapist. Due to depressive states, we are sometimes referred to a psychiatrist, but antidepressants do not solve the problem of myasthenia gravis symptoms, but only support it.
This mask hides physical pain, as well as weakness of the upper and lower extremities, frequent falls, problems with swallowing food and liquids.
Did you have these exact symptoms?
The first came to my mind 17 years ago, when my third son was born. I had a problem giving birth to him naturally, even though my previous two births had gone that way. I thought it was because of my age - I was 34 at the time. But the fatigue from childbirth and pregnancy did not subside in the following months.
I felt that something had changed radically in my body. Then my odyssey of doctors began. I saw a neurologist, a rheumatologist, an orthopedist, and also an ophthalmologist because my hawkish vision was starting to fail.
I saw the inscription on the strip on the TV screen with a characteristic glow.
Source: Wprost
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