Asociación de Síndrome Miastónico Congénito

English - Español
Contact with us:
Phone: +34 699 66 44 84 asmic@asmic.es

FOR YOUNGSTERS AND ADULTS


Dear friend,

We can imagine the long and tortuous road that led you to that moment in which, somehow, you managed to get your disease named. We can also imagine how much you have suffered.

Eventually and since everything takes you great effort, you might have opted by entrench yourself at home and limit your activity to the minimum strictly necessary, creating tons of excuses and pretexts to justify before yourself and the others why it is that you act that way. But, as a matter of fact, you are the first one who ignores why you are doing this to yourself.

Knowing that your condition is classed as an unknown disease, with its particular symptoms and biological origin and that you share it with only a small and “select group of people” is not a minor issue.

You have always known you were different. To a lesser or greater extent, you were aware you had certain impairments that translated into multiple (and very unpleasant) episodes in which your body did not behave properly. Basically, those seizures would manifest as a general muscular weakness that prevented you from doing the most basic activities. Depending on their intensity and frequency they could interfere in a very determining way in all aspects of your personal life not to mention the professional one.

Living this way, without the perspective of a getting a diagnose that explains this dysfunction, is an additional psychological burden to the intrinsic suffering of such an impairing situation. The feeling of impotence you get from visiting all kind of doctors and nobody getting the diagnose right, does nothing but increase your confusion. You don’t know what it is this thing you have, why you have it or how it will evolve. You cannot explain anyone what is going on with you because no one, not even you, knows it. In short, you lack references and find yourself in a situation of isolation that prevents you from facing your handicap in the most positive way.

But your luck has changed: If you are reading these lines it means you have been diagnosed with CMS which brings you some release. This does not mean you are cured, far from it, but it implies a very important change: Now you know you have a disease that has been classed, with a series of characteristics you share with other people. You are not alone, and most importantly, you are not losing your mind as you might have even thought, there was really something wrong with your body.

But, what matters most is that CMS is one of the few neurological diseases which can be treated. By doing so and in a very significant percentage of the cases, an improvement in the symptoms of the disease occurs with the consequent improvement of patient’s daily life.

The fact of having been diagnosed marks a decisive milestone in the life of a patient with CMS. Knowing what you have helps you understand what happens to you and act accordingly. These sheds a new light on you about your own perception of your handicap and the way to face it. Though CMS is not a minor condition, the truth is that by following an adequate treatment and acquiring appropriate knowledge about it you can lead quite a normal life (since there are many the things you can do).

In conclusion, if you have just been diagnosed with CMS, a new period starts in which you will experience a desire to know more thoroughly what this disease is and you will probably want to meet other people who suffer from the same condition and have been through similar circumstances. Due to all this, we hope you will find in this association the support that will help you live your life fully and explore all your potential.

Be welcome!