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I find myself lucky in this bad luck. Despite the illness and the symptoms that remind me every day that I am affected, I often tell myself that I am grateful to be able to continue living a relatively normal life.

Two years ago I even started to play hockey again... well ball hockey since my skating is not very graceful anymore.

The lives of those affected are turned upside down. They must be adjusted accordingly.

The future is very promising.

Thank you for reading my story. Thanks to the various fundraisers, research is progressing rapidly, and the quality of life of those affected is better.

I am very motivated by the hope of finding a cure that will eliminate this disease.