Often, after hearing the diagnosis, all the puzzle pieces fall into place for patients. Difficulty getting the skeletal muscles going during any physical movement. If you want to get up, climb stairs or cycle, everything corresponds to myotonia congenita. Of course you are happy that a diagnosis has finally been made. The first blow, however, is being told that there is no cure. You will receive more information about the symptoms, which are already physically familiar to many, but are only now being given a name. The biggest disadvantage of the condition myotonia congenita is also the most undescribed. These are the psychological aspects that trigger the disease myotonic congenita. You will always encounter the empathy and misunderstanding of many people. This can be difficult to deal with, especially in younger patients. My advice for parents or loved ones of someone with this condition, be alert to this and seek professional help if necessary. After all, people don't see anything about you, from the outside you are not a sick person or you do not walk with crutches and fortunately the condition does not affect your intellect. So you will often be confronted. This starts when you have to climb the stairs at school to go to your next lesson, or when you have to climb the stairs of a stadium later in life. Can't you just go through the comment? Or someone trying to squeeze past you and you are only focused on not falling when the person passes you because they accidentally bump into you. This makes many patients more alert to what is happening in his or her environment. You may be familiar with making an excuse when you have difficulty climbing the stairs by starting a fake conversation on your cell phone or looking for something in your bag when you haven't lost anything. Even though your symptoms have now been given a name and you can try to inform other people about them, you notice that some people lack understanding, which results in shame. With every public move you make you will feel shame and whether you like it or not you will be confronted with this for the rest of your life. Learning to deal with this is not an easy matter, but it is certainly a requirement. A requirement that is unfortunately overlooked by many doctors.
