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.
How do you battle this rare disease?
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?
T: Yes.
FB: A lot?
T: Yes, constantly. Permanently.
FB: Okay.
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 full episode is viewable on YouTube. Please contact us if you can provide a translation of the complete transcript.
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.
I have had Mdds for 10 years, it started when I was 27 years old after a 8 hour flight.
I have only been diagnosed today, 10 long years of wondering what the hell was wrong with me!
It’s great to hear that you have finally gotten a diagnosis. MdDS Friends, our support group on Facebook, is a terrific resource with both experienced and newly diagnosed MdDS Warriors like yourself. You’ll find members from around the world, including others whose onset came in their 20s.
I have had MdDS for over 12 years. It is unrelenting. I always feel like someone is pushing the back of my head. Fortunately it hasn’t totally kept me from functioning. It has limited me, however, because of problems with balance and fatigue.
It started soon after we went on a seven day cruise in Hawaii for our fiftieth wedding anniversary. I can sleep with no problems, but when I sit or walk I feel like I’m walking on a soft mattress. It also feels like the ground or floor is moving, like from an earthquake. I cannot get used to it. To keep from falling, I use a walker.
I have had this for 16 years. I compare it to being on a merry go round, where you are going around & up & down at the same time. On windy days, or days when the barometric pressure is high, I have difficulty functioning at all. Brain fog is an understatement. It is difficult to do things I used to enjoy. When baking, I continuously review the recipe & sometimes still miss ingredients. It is extremely frustrating.
I do find a little relief while riding in a car or swimming in the pool, but as soon as I get out, the rocking resumes.
Bonsoir, j’ai ça depuis 4 ans et j’ai trouvé cette maladie il y a peu car j’ai vu beaucoup de spécialistes et j’ai fait beaucoup d’examens mais aucun ne trouve et ne comprend ce que j’ai.
je voulais juste vous demander si ça vous ai passé ou est-ce que vous avez toujours les symptômes? et si non qu’avez vous fait?
merci d’avance pour votre réponse
cordialement
Pour trouver d’autres personnes qui pourraient avoir des expériences similaires à vous, nous vous invitons à rejoindre notre groupe de soutien en ligne sur Facebook, MdDS Friends. Nos membres de plus de 60 pays, dont beaucoup en France, ont une grande variété d’expériences et de conseils à offrir. Utilisez la zone de recherche et les balises de sujet pour découvrir des réponses à vos questions ou commencer un nouveau sujet. Le groupe est très réactif et solidaire. (Traduction de l’anglais vers le français fournie par Google Translate.)
Bonjour,
Vous pouvez aussi nous retrouver sur le groupe Facebook : syndrome du mal de débarquement francophone.
Belle soirée,
Tamara
I have mdds for3 years 5 months .