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 but, overall, your story should be positive and include helpful strategies for managing MdDS. The questions are thought-starters, and you do not have to answer every one.

    You may also submit your story by email to If sending a photo, please send a hi-resolution image (maximum file size: 5MB). We reserve the right to crop images.

    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 In consideration of those with visual sensitivity to scrolling, long essays will not be published.
    • Share a picture. Including a high-resolution picture, preferably in horizontal format, of yourself or something meaningful to your story is recommended but optional.
    • 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.

    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.

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    Rocking Candles, Giving Back since 2018

    For eight years, Rocking Candles has been explaining to others what daily life is like for MdDS sufferers. Kate, owner and MdDS warrior herself, has also been giving back through donations to support research so we can all “get off that boat.” Read to learn more about Kate and her custom candles.

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    Russ’ Busy Day at the Lake

    I had just spent the 2016 Memorial Day weekend on my parent’s boat and dock. After leaving the lake, we stopped at a favorite eatery. I finally sat down for the first time and felt “it.” I looked at my wife and asked, “Does the floor feel like it’s moving?”

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    Share Your Story MdDS Foundation 3:58 pm