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When North Bay's Brandy de Blois decided it was time to share her journey with Mal de Débarquement Syndrome (MdDS), she hoped to reach a few people out there with similar symptoms, help direct them toward a diagnosis, and most of all, let them know they are not alone.
Mission accomplished, and more.
Two weeks following the initial BayToday article featuring Brandy describing her symptoms as "a rocking feeling. A constant feeling that I'm in motion. A feeling of being drunk that never goes away," it has been posted on many of Village Media's news outlets and shared across social media, reaching Sudbury, Sault Ste. Marie, southern Ontario, the United States and beyond.
See original story: Local woman hopes to reach others afflicted with same rare and debilitating medical condition
Brandy's role as an administrator on the Facebook page Mal de Debarquement Syndrome – MdDS Friends has her connected with the MdDS community online. She says she is grateful to have people she can count on who understand the challenges of living with MdDS and knows many of the new members of the page were directed there through her story.
"I've let in an influx of people since the story was posted," she confirms. "It's also been shared to the VEDA Facebook page, which is associated with the Vestibular Disorders Association (VeDA) and the MdDS Foundation Instagram and MdDS Foundation on Twitter.
"It's been amazing."
So many have been previously misdiagnosed, Brandy notes, and finally receiving that proper diagnosis can be life-altering.
"One person from Sudbury says they are going to take my story with them and have their family and friends read it instead of constantly trying to explain how they feel," Brandy shares.
Brandy says several others she has been in contact with recently had a diagnosis or probable diagnosis but didn't know there was a support group. She has said the easiest way to describe living with MdDS "is to imagine you're drunk and you're walking in a funhouse at an amusement park."
She adds, "This is exactly what I hoped would happen. I was so nervous to put myself out there and say to everyone, 'Yep, I have a disability.' I was afraid of all the negative things that could come from being vulnerable like that, but I'm so glad I did because my main goal was to potentially help someone."
In her role as an admin for the support page, Brandy sees a glimpse of the story for each person who wants to be a part of the support group.
"And, because of that, I know at least two people from North Bay who didn't know what Mal de Débarquement Syndrome was were helped by my story, as well as someone from Quebec and someone from the United States."
According to Brandy, other people who already had a diagnosis found the support page because her story was shared on several social media platforms, reaching other Canadians, people in the United States, and as far as the United Kingdom and New Zealand.
Brandy is happy to help people suffering from the symptoms. MdDS predominantly occurs in adult women between the ages of 30 and 65 and is characterized by a persistent perception of self-motion — such as bobbing, swaying, and rocking — and is accompanied by symptoms such as heightened visual sensitivity, fatigue, and anxiety. Additional symptoms include impaired cognition, lack of mental clarity, blurry vision, depression, and lethargy.
"I'm not a doctor and I can't say for sure it is or isn't what they have, but if they felt like they could relate to the symptoms I described in my story, then I hope they will seek out doctors who can help them and mostly I hope they will find doctors who will listen and maybe that those doctors will do a bit of research for their patient as well," Brandy adds.
As for what's next for Brandy, she says she will continue to help more people feel they aren't alone by offering a good support system. She notes sometimes the Facebook support group is the only type of support a person has.
"I keep receiving personal messages over Facebook, Instagram and Twitter from people thanking me for sharing my journey this far with Mal de Débarquement Syndrome. They said if I hadn't, then they wouldn't have found others like them in this support group and oh, my gosh, I am so glad."
