Growing up with Thomsen or Becker myotonia can be very difficult. From an early age you quickly notice that you are different from all the other children in your class. Please inform the school immediately of the diagnosis so that they can take this into account. There is nothing more annoying than being called to class as a child when you cannot immediately get up and walk. Participating in sports also requires some adjustments and understanding. For example, a simple and generally fun game of tissue paper can be very confrontational. A patient may never be able to get up immediately from a sitting position and move quickly to follow a classmate. In addition, children can sometimes unconsciously be mean to each other. Take, for example, the fact that you are often chosen last in group sports. That is why I cannot emphasize enough how important it is to enter into discussions with the school in a timely and proper manner to prevent these types of things. Fortunately, as a diagnosed patient with myotonic congenita, you are fully recovered mentally. However, physically you will fall short in many aspects of daily life. Responding to this with the right information can make all the difference and make life a lot easier and more pleasant. You will soon be able to get one here on the website find an informative letter for parents and caregivers of patients which you can use as a handle and share with the school or teachers. We hope to contribute to the positive development of children with the condition myotonic congenita.
