More Stories

LeeAnne suffers with dizziness that isn’t vertigo.

My name is LeeAnne and I have had MdDS for 5 years. After my third cruise, an 8-day cruise with rough seas, I noticed a change in my eye sight and had trouble reading the menus. And when I debarked I never got my land legs back. I saw my family doctor and explained my […]

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Meet Jim, long-time MdDS Warrior from Belfast.

Hi, I’m Jim Hunter, 45 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 trying to sleep. […]

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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

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Submit Your MdDS Story

MdDS is an invisible illness but that doesn’t mean you are. Share your experiences with others and tell your story.

Before accepting your story for publication to our website, we require a short draft emphasizing the main point of your narrative in an e-mail to Provide a working title for your piece in the subject line of your email. A Board Member will review and let you know if we’d like to see the full narrative. Note that a request for your full narrative is not a guarantee of publication. The following guidelines are designed to help you write your story.

Submission Guidelines

Guidelines for Submitting Your “Faces of MdDS” Story

Include only information that you feel would be helpful to medical professionals or others living with the disorder. For example, people may want to know:

  • What were the precipitating event(s) or the circumstances prior to onset?
  • Were you misdiagnosed? How difficult was it for you to get an MdDS diagnosis?
  • What treatments or therapies have you tried? How did they affect you? Please note that medication dosages will be redacted so the information cannot be misconstrued as medical advice. If you participated in a clinical trial, your outcome or experiences as a study participant cannot be shared. 
  • How does MdDS affect your life, family life, employment, and activities?
  • What or who have you found helpful?

The Foundation strives to show the MdDS community that there is hope. Keep your story generally positive. If you are feeling down, please share in our online groups to get the support you need. You are not alone.

The overall length of your story should be between 800 and 1,500 words. Longer essays will not be published, as the excessive scrolling is problematic for those with visual sensitivity. This online tool will help you know your word count.

Links to other websites may be removed; phone numbers, email addresses, and medication dosages will be removed. The Foundation reserves the right to edit for grammar, story flow, and other reasons but will not alter your story’s intent.

Including a high-resolution picture, preferably in horizontal format, of yourself or something meaningful to the narrative is optional.

Submit Your Story

Stories MdDS Foundation 3:58 pm