Ideas and suggestions

You have probably gone through a lengthy process yourself and dealt with Myotonic Dystrophy intensively. The disease affects your life and your plans. Everyday. Regardless of whether you are affected yourself or have a member of your family that is DM-affected.


Over the years, you have learned a great deal: about yourself, about the disease and also about how you can master the daily challenges of living with DM. On your way, you have received some great support. And you have certainly encountered a lack of understanding and, perhaps, rejection by others.


... that someone is sitting opposite you, someone who is at the very beginning of this process: what would you like to give this person on the way? What is especially important to you? How did you set yourself up in your life and what did you experience in beauty as well?




Write your story, ...

... as if you were telling it to someone who has recently been diagnosed with Myotonic Dystrophy. All your experiences are important. By sharing them with others, you can make it easier for many to learn more about the disease and to be better prepared for their challenges.

How you are living with Myotonic Dystrophy, whether you are affected yourself or someone in your family, is your personal truth. When your story is published just as you wrote it for this project, you give others a very personal insight into your life. 


In order to protect your privacy at any time, we guarantee that your full name and your e-mail address will not be disclosed to third parties without your explicit consent. Please also make sure that details from your story do not allow anyone to know your identity or where you live. In particular, avoid the name of the city in which you live or the name of the school you have attended. You are also free to send us your story without including a photo.


Furthermore, at any time, you can request the withdrawal of the publication of your story on RareConnect from the "Our Voices - Our Life" team or the RareConnect team directly. 


By submitting your story and, if you choose, your photo, you expressly agree that we may use it for publication on RareConnect, on Facebook, in the book "Our Voice - Our Life" and for the project celebration in Basel. Any further use of your story requires your express written consent.

Andreas Herzog & Erich Maurer,

with the consent of

sponsored by