Stress affects myasthenia gravis
KISS Interview: Myasthenia Gravis self-help group
Everyone has their own myasthenia gravis
Self-help group for severe muscle weakness offers support for those affected by the rare disease
Anyone suffering from myasthenia gravis had to wait around two and a half years on average for the correct diagnosis of the rare disease. The "severe muscle weakness" affects the face and neck, speaking, swallowing, but also the rest of the muscles in the body. Symptoms can worsen under stress and physical exertion. In Kassel, those affected and their relatives can find help, exchange and information in a self-help group.
Group leader Claudia Strucken made coffee and tea, water and cake are also on the table in the Josef Rinald room at KISS. Since April 2017 she has been leading the group on Myasthenia Gravis, to which sick people come from all over Northern Hesse. Claudia Strucken was diagnosed with the autoimmune disease in 2016. She had the typical symptoms: double vision, drooping eyelids and tired eyes and her neck became more and more difficult to move. She could neither drive nor go straight. Her legs and arms still hurt to this day.
When she needed treatment for high blood pressure and the cause could not be found, the doctor prescribed beta blockers - which made her condition worse because this drug is contraindicated for myasthenia gravis. She finally found a neurologist who made the correct diagnosis. From that moment on, things went uphill for her. She sought contact with the self-help organization Deutsche Myasthenie Gesellschaft (DMG) in Bremen and says today “DMG saved me.” At last she felt understood and was provided with all the necessary information.
It is tricky that every sufferer has their own myasthenia gravis with different effects and symptoms. A good phase can be followed by a sudden crisis. Life can no longer be properly planned. This roller coaster ride is difficult to understand for the environment. Claudia Strucken met with incomprehension when she could barely get out of bed at times. “She shouldn't line up like that” was a common reaction. Or "She doesn't feel like it". Many advise exercise, which does not help with this disease. The therapy must be tailored to the individual. Therefore, the group leader recommends going to one of the medical centers, the doctors working there are familiar with this disease. The emergency passport and the emergency primer, a small booklet in which everything is necessary and which every patient should have with them, is also important to her, as it can save lives in an emergency. Because many a doctor is rarely confronted with this disease, these documents are very important.
Don't stay in the negative
Sick people or relatives usually want to get rid of their worries in the group. Those affected exchange information about everyday aids. Many of those affected do not know exactly what they are entitled to. In the group they receive a lot of helpful information. Claudia Strucken prepares topics or organizes lectures.
For example, on the subject of traveling with illness, a speech therapist has already been invited. Today she prepared information on the "responsible patient". Your concern for the group is to see what is still going on despite the illness. That is why it always encourages us not to remain in the negative.
Information on myasthenia gravis
The autoimmune disease myasthenia gravis is caused by severe muscle weakness. The transmission between nerve and muscle is disturbed, certain receptors (such as for acetylcholine) are blocked. Symptoms at the beginning are usually double vision and tired eyes, the eyes are unevenly wide open. The muscle weakness can affect speaking, swallowing, and facial expressions or breathing. The head feels heavy, the upper arm and shoulders, and the legs can also be affected. The symptoms get worse with exertion, exertion and stress. The disease cannot be cured, but the course can be positively influenced by therapy. Myasthenia Gravis is a rare disease with one disease in 10,000 people.
In myasthenia gravis, antibodies are often found in the acetylcholine receptors. Therefore, the electrical impulse from the nerve can no longer be transmitted to the muscle, the muscle is not excited. Acethylcholine is the messenger substance that mediates between nerve and muscle so that the stimulus is carried on.
You can find out more about the group here
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