On the Importance of MdDS Friends
When I found the support group, I was curious, cautious, relieved and grateful. I have gained so much being a member of the MdDS Friends Facebook group. It has helped me see how helpful it can be to share our experiences.
The variability, unpredictability and invisibility to others is the hardest part of having MdDS but things have gotten better. I am learning to live with MdDS; this is how I cope with the challenges it presents. I am also learning how to seek good support and to identify when health professionals might not be able to help. Leaning on MdDS Friends, I am able accept this more easily.
A Personal Message
I want people to know that, like a wobble, a support group goes both ways. It is about giving as much as getting support. We can help each other by sharing experiences, but we also share a crucially important goal of educating the wider public about MdDS. I hope my story encourages you to join me in raising awareness.
Palm, motion-triggered
Age at onset: 40s
Palm is just one of a dozen MdDS patients sharing their stories during MdDS Awareness Month. June is almost over but it’s never too late to share yours! mddsfoundation.org/share-your-story/