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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A Guide for Our Caregivers

If you are a sibling, parent, child, friend, or caregiver to someone dealing with chronic illness, chances are you may ask yourself occasionally — or nonstop — How can I help? As a full-time caregiver to my wife, and also as a person with MdDS, I’ve written this guide which I hope will help you […]

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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 us your story.

Send a document or include the narrative in an e-mail to connect@mddsfoundation.org. A Board Member will reply to you before it is published. 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 professionals or others living with the disorder. For example:

  • Describe the precipitating event(s). Try to be brief so those with visual sensitivity don’t have to scroll too much.
  • Include the length and conditions of the motion experience or the circumstances surrounding a spontaneous onset such as recent childbirth, history of migraines, etc
  • Explain how you received a diagnosis or lack thereof.
  • Describe treatments that you have tried and how they affected you. Please note that medication dosages will be redacted so the information cannot be misconstrued as medical advice.
  • Describe how MdDS affects your life including your family life, employment, and activities.
  • Include an appropriate picture, whether of yourself or meaningful to the narrative.

Submit Your Story

Stories MdDS Foundation 3:58 pm