I made the videos because one of my friends, that has Central Core Disease like I do, told me that her husband felt she was just being lazy. He felt she just needed to try harder. He also felt she should be more positive. I made these videos specifically for her to show her husband that other people have affects from this disease that they cannot control. There are many sides to having a disease. I made this video a few years ago. Much has changed since. I have embraced the things that I CAN do and appreciated them far more! I have had much more loss since creating these videos. Much more atrophy and much less ability to do the things I was able to do in these videos. But I feel more blessed now in the fact that it is a sheer miracle that I can do what I can with the amount of weakness, atrophy, and pain that I have. It is my hope that the videos I made can help individuals that have chronic illness feel UNDERSTOOD AND VALIDATED. And also that their loved ones will see that they are not the only ones.
Living with Central Core Disease
The emotional component of Central Core Disease
Central core disease and limited mobility cleaning