Rare Disease Mal de Debarquement Syndrome Often Affects Quality of Life


Not quite two years ago, my wife and I stepped off a seven day cruise adventure of the Caribbean. It was our first cruise, and our hope was that it would be a good way for my wife (who has severe and crippling Fibromyalgia and chronic fatigue syndrome) and I to vacation together. Instead, it turned into a nightmare for me, with symptoms of a syndrome that continues to challenge and affect my quality of life to this day.

When I disembarked from the ship, my balance was off, and I felt as if everything under me and around me was bouncing and floating. I figured I just had to get my land legs back. A week, then two weeks went by, and I still felt the same way.  Neither Urgent Care nor our primary doctor could figure out what was going on with me, so we took to the internet and found the MdDS Foundation. It was a Godsend to find a portal of information, that at least offered the beginning to possible answers.

Perhaps the most bizarre part of my story, is that the majority of people who end up with this syndrome (that is rare, poorly understood, and can linger for months/years/who knows how long) are women who are in their 40’s, suggesting that it is possibly a hormonal condition. I was obviously the opposite, a man in my late 40’s, and I came away from a cruise with MdDS. Much information about Mal de Debarquement syndrome (MdDS), available on the MdDS Foundation’s website, suggest this rare disease is not always caused by a cruise.

For me, it has essentially been almost 22 months of a sensation that, when I walk, I am walking on a mattress, and when I stand or sit, it is as if I am on a boat that is floating on water. My balance, as a result, is severely compromised; I am tired most of the time, and my level of energy is about a tenth of what it used to be. I get migraines after every extended (more than an hour) trip I take, be it on a plane, in a car, on a train, on a bike, etc. The migraines typically last 10-16 days.

I do not know when or if I will ever get better, but I am working with a very kind, devoted primary care physician who has been willing to try anything with me. I am grateful for things like the MdDS Foundation as well as the Global Genes Project.  It is sites like these–as well as the kindness and generosity of so many who volunteer countless hours organizing, making bracelets, researching, raising awareness–that make dealing with a rare syndrome just a little more bearable. Thank you so much, all of you who dedicate your time and energy to helping make this a better world for those who struggle with rare conditions.

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