Showing the global nature of syndrome du mal de débarquement and other rare conditions, French journalist and tv personality Faustine Bollaert interviewed a young woman who’s been dealing with Disembarkment Syndrome since June. Tamara constantly has the feeling of living on a boat. Watch the interview in French or read the transcript in English here.
In this episode of It starts today, Faustine Bollaert welcomes men and women who fight every day against a disease unknown to the general public. Thoracic Gorham Syndrome, Cleidocranial Dysostosis, Disembarkment Syndrome. The names of these disorders do not mean anything to you and for good reason. They affect a tiny part of the world’s population. Our guests tell their story.
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Tamara’s MdDS TV Testimonial with Faustine
Faustine: You discovered your illness very recently. What is it?
Tamara: Yes, so it’s a neurological disorder called “mal de debarquement syndrome.”
FB: It’s invisible. And what does that mean?
T: So that means that I have the feeling of living on a boat 24 hours a day. But not with the advantages. I mean, I really have the feeling of rocking all the time.
FB: So you have nausea all the time?
T: It’s not nausea. It’s really all around me, that I have no stability and things are moving.
FB: What moves?
T: It is motion all the time. I feel motion. And it’s even worse when I’m sitting or lying down so I never know the feeling of rest.
FB: So things are moving?
FB: A lot?
T: Yes, constantly. Permanently.
T: Yes. It involves other symptoms as well.
FB: Like what?
T: Such as permanent brain fog. I feel like I have cotton or a cloud instead of my brain so it’s hard to be extremely clear-headed in situations with that. It involves cognitive impairment which is quite significant. Memory loss, there’s concentration problems…
FB: And how long ago you were diagnosed? How long ago?
T: So I was diagnosed in August, mid-August.
FB: Ah, yes…
T: And in fact the disorder was triggered in early June.
FB: Ah, yes, so tell us… how did it start last June?
E: So last June I found myself, so it was June 2, I was on a boat with some friends having a drink, eating tapas, enjoying the Rhône…
FB: Maybe you thought it was alcohol then?
T: No, because we hadn’t particularly drunk a lot, but it was a nice evening. And, yes, everything went well. The next day I go to work, things are going well, too. Then we meet up with Michael at the restaurant in the evening, and when it’s time to pay the bill I realize that I cannot get up from my chair. It was not an excuse not to pay! And then in fact everything is pitching, there are placards in front of us with the menus of the day written down, quotes, things like that. I can read what is written but I can’t understand the meaning, really.
FB: That scares you very much.
T: It scared me very much. I said to myself, “Well, I have early-onset Alzheimer’s disease.” And then in all that, immense nausea, exhausting fatigue, really, I wasn’t all there anymore. And so I just sit there, Michael pays the bill, and then we go home. And then I throw up. Well, here I am.
FB: Did you go to the emergency room that day?
T: No, I was not in the emergency room although it caused stress but we could really tell ourselves that we had just eaten a little too rich that night.
FB: Yes, it could be, “We’ll see how it goes tomorrow.” Did you think it might just be something you couldn’t digest or malaise?
T: There was a part of me that was really not sure because the symptoms are not at all and another part that was trying to say, “It’s going to be fine, I ate a little too rich, it will pass tomorrow.”
FB: Have you had any malaise before? Health concerns?
T: No… no no, I’ve never been unwell or anything.
The interview supports internationally recognized Rare Disease Day. Observed on the last day of February every year, it reminds us of the challenges faced by rare disease patients everyday worldwide and inspires us to redouble our efforts to make their lives better. In just the few days after airing, many francophone MdDS Warriors have joined our online support group. If you suffer with MdDS and have yet to discover MdDS Friends, we invite you to join (you must use your Facebook profile) and learn from its 5,000+ worldwide members.