Hello, This Is Me
1 in 10 Americans has a rare disease or disorder. Globally, the figure is 350 million. Rare diseases are not rare! This poem will resonate with someone you know. Please read and share, Hello This Is Me.
Tag: Living with MdDS
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 […]
A Guide for Our Caregivers
Mike Nelson, full-time caregiver to his wife and also a person with MdDS, shared this helpful guide to help you navigate life with MdDS.
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 […]
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 […]
“Why do I feel like I am on a boat? Voila MdDS,” Elizabeth discovered.
In September 2017, my husband, my two sons (ages 20 and 21) and myself went on our first cruise, two weeks before the canaries Portugal Spain. All was well on the cruise, none of us were sea sick, but we did have rough days around the bay of biscay. On return home, my two sons […]
LeeAnne suffers with dizziness that isn’t vertigo.
After my third cruise, I never got my land legs back. I saw my family doctor and explained my symptoms to him and he referred me to two neurologists; one said it was an ongoing migraine and the other said vertigo.
There is always hope. Never give up. ~ Jodi
My name is Jodi Leffue, and I am from Franklin County, Virginia. In August 2017, I attended a family vacation on a cruise. I had a wonderful time on the cruise. I noticed I could feel the ship rock but was able to still enjoy myself. On the excursions, I still had the sensation of […]