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. When published to our blog or newsletter, your story can enlighten those who are unfamiliar with the disorder, including medical professionals, and also help others living with it. This page is designed to guide you in your storytelling. 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 In consideration of those with visual sensitivity to scrolling, long essays will not be published.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.

    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.

    Read More

    Meet Jim, long-time MdDS Warrior from Belfast.

    I have been suffering from MdDS since I was a child. It has got gradually worse as I got older. When I step out of an elevator I feel I am bouncing up and down inside for days after. It is very erratic especially when…

    Read More

    Meet Jodi L., MdDS Awareness Star

    I have had a crazy year but I want to share some things I have been doing to raise awareness about MdDS. ~Jodi L., #MdDSwarrior

    Read More

    Share Your Story MdDS Foundation 3:58 pm