The story of Sian
Today is Rare Diseases Day, so in light of that I want to raise awareness of my diagnosis, in the hope that someone else may be able to put a name to what they have and also to vent a little. I was diagnosed during my first pregnancy in 2017, with Mal de Debarquement syndrome. MdDS is a neurological condition that causes the individual to perceive a feeling of motion when there is in fact none. My most recent episode was triggered by a plane journey in 2017 and the feeling of bobbing has not stopped since. But my first ever attack was aged around eight or nine after a boat trip on the Norfolk Broads. I went into remission around two years after this, but being so young, and the disease being more or less unheard of, not a lot of people believed me when I expressed what I was experiencing. It causes me huge anxiety before I get on transport incase it exacerbates my symptoms, I can’t use lifts, watch tv programs or films with too much camera movement or do exercises that involve up and down movements such as squats. There have definitely been times since my diagnosis that I have thought it would be much easier not being alive, especially after a particularly violent episode post scuba diving in Sicily. But the worst part of MdDS by far, is that I have not been able to rock either of my children.
I’m the first person to roll my eyes at a woe is me post, but when I was at my lowest pre diagnosis, I would have felt much less crazy after reading a status like this (not that I would wish this on anyone). So please, if you are experiencing any of these symptoms, see your GP and mention MdDS.
Don’t suffer in silence or let anyone tell you what you’re experiencing is in your head… even though I suppose technically it is 🤣
There are ENTs who specialise in this condition who can give you medications, coping strategies and help you learn your triggers. #rarediseasesday #mdds #maldedebarqmentsyndrome