Home / Living with MdDS – Share Your Story Be seen. Be heard. Share your story. MdDS is an invisible illness but that doesn’t mean you are. We invite you to share your personal story of how MdDS has impacted you. If your story can enlighten those who are unfamiliar with MdDS, especially medical professionals, and help others living with the disorder, it may be published to our blog or newsletter. This page is designed to guide you in your storytelling; the questions are thought-starters, and you do not have to answer every one. Overall, your story should be positive and include helpful strategies for managing MdDS. Including a photo that helps tell your story is a good thing! Please provide a title for your story What impact do you hope to make? How did you feel when you found a community of others like yourself? What has been the hardest part of having MdDS? How have things gotten better? What personal message do you want to share? Your Name (as you wish it to appear publicly) Your Email (will not be published) Your social media handles so we can tag you when sharing your story: Age at onset: Under 3030s40s50s60+ Do you know what triggered your MdDS? Non-motion event (spontaneous)Motion event (incl. virtual reality)OtherUnknown The best way to be seen is by sharing a photo that complements your story. Must be your own and not infringe upon any third‐party’s rights. Accepted file types: jpg or png. Max. file size: 5 MB. We reserve the right to crop images. Please answer the question below Which is bigger, 2 or 8? Note: A successful submission is not a guarantee of publication. Submissions where the author's desired impact was not clearly conveyed will be rejected. Required Δ Tips for Getting Your Story Published Make it helpful. Actionable information for doctors or patients is valuable. Keep it short. In consideration of those with visual sensitivity to scrolling, long essays will not be published. Don’t get too personal. Phone numbers, email addresses, and medication dosages will be removed. If you participated in a clinical trial, your outcome or experiences as a study participant cannot be shared unless the study is complete with published results. The Foundation reserves the right to edit for grammar, story flow, and other reasons but will not alter your story’s intent. Links to other websites may be removed. We strive to show the MdDS community that there is hope. If you are feeling down, please share in our online group to get the support you need. You are not alone. Need inspiration? Read the featured stories below or check out our blog. Our Blog Support Group Featured Stories Meet Board President, Marilyn Josselyn As a result of the challenges in learning about and adjusting to life with MdDS, Roger and I began a crusade to increase awareness about the disorder. Read More Disability or Superpower? It’s silly, but sometimes it’s a bit of comic relief that pulls me from despair. My superpower is a special ability, and why I feel the way I do. Read More Sky, Sea & Me Since Oct 2014, I feel stuck in a space somewhere between the sky and the sea. As is the case for most of us, MdDS invaded my life once my feet touched the ground after a one-week cruise. Since the variation and intensity of my symptoms continue to be as unpredictable as the weather, I […] Read More Donate Let’s cure MdDS and give people their lives back. Share Your Story MdDS Foundation 3:58 pm
