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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Provider Outreach: New Committee Advocates for MdDS Patients

The MdDS Foundation is pleased to introduce you to our Provider Outreach Committee, co-chaired by Marilyn Williams and Suzanne Marsh. The committee works to raise awareness of MdDS among health care providers and to provide you with the best Professional Directory possible. Marilyn Williams is an MdDS warrior. She diligently researches and updates information on […]

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Picture Perfect

I believe that pictures are the most beautiful things that exist. You are capturing a moment in time that lasts forever. Everything stops for that moment and is still. Little did I know that this picture would be my last ‘still’ moment. I wanted to capture the moment of the wanderlust girl I am, well […]

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I Look Normal, by Tami G.

I wrote this poem a number of years ago (maybe 5 years ago) and I sometimes post it as a status update. My daughter is no longer a toddler but the rest holds true. ~ Tami Grosset I look normal. I sit in my chair and chat. I giggle and gossip just like I’ve always […]

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We can do this. I believe in you! ~ Katie

My name is Katie Miller, and I have had MdDS since 2002. I took two short, uneventful flights on a Friday and two similar flights back on the following Sunday. I woke up that Monday with the unnerving sensation of walking on mattresses, and it looked like the walls were moving. I had absolutely no […]

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Be Still: a Poem by Farzleen

I am sharing my experience with fellow sufferers of this misunderstood condition because of how it took close to a year before a proper diagnosis was obtained after undergoing many tests, how frustrating and depressing it was prior to that not knowing what was actually happening to me, and for having people closest to me […]

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