Home / Blog / Raising Awareness / Your Story Matters: Let’s Get MdDS in the Headlines Our Blog Raising Awareness, I Am Empowered 2.27.26 Your Story Matters: Let’s Get MdDS in the Headlines MdDS has been making waves lately. With recent features in Good Housekeeping, The Independent, and UNILAD, the world is finally starting to listen. But as the spotlight grows, so does the need for accuracy. Setting the Record Straight The MdDS Foundation contacted the authors and editors of the recent articles to help correct two of the most common myths: Myth 1: It’s just “sea legs.” The Reality: Standard “sea legs” commonly fade within 48 hours. MdDS is persistent, with symptoms lasting at least 30 days. Myth 2: It’s an inner ear issue. The Reality: Repositioning ear crystals (like the Epley Maneuver) won’t help. MdDS is a neurological (brain) disorder, not an ear condition. Correcting just these two misconceptions reduces misdiagnoses and helps patients avoid ineffective treatments. The MdDS Community joined by speaking out on Facebook—to highlight real-world lived experiences—and the media heard you! Tap the links above to read the updated articles. Misconceptions corrected. ✅ ✅ Ready to move forward? Take Action: Tell Your Story In honor of Rare Disease Day (Feb 28), we are calling on you to contact your local media. Whether it’s a newspaper, radio station, or TV health segment, they are always looking for impactful human stories. Here’s how to start: Identify your contact: Look for health or travel editors at your local outlets. Highlight the community: Mention that thousands of us are supporting one another and that the MdDS Foundation is actively funding research. Mention the Registry: Share that a new MdDS Patient Registry is launching soon to help drive research towards a cure. Save the date: Inform them that June is MdDS Awareness Month. It is your story to tell. By speaking up, you turn personal experience into public awareness. Template: Pitch Your Story to Local Media Copy and paste the text below. Fill in the bracketed information to personalize your message. Subject: Local Story: Living with MdDS, the Rare Neurological “Motion” Disorder Dear [Editor/Producer Name], As we recognize Rare Disease Day on February 28, I am reaching out to share a unique health story from our local community. I live with Mal de Débarquement Syndrome (MdDS), a rare neurological disorder that feels like being perpetually at sea. Unlike common “sea legs” that fade in a day or two, my symptoms have lasted for [Months/Years]. Despite being a brain-based condition, MdDS is often misdiagnosed as an inner-ear issue. This leads many in our community to see the wrong kind of doctor and try ineffective treatments. I want to share my journey to help others in [Your City/Town] find the right care sooner and to highlight the MdDS Patient Registry currently being built as a natural history research study. With MdDS Awareness Month coming up in June, I would welcome the opportunity to interview with [Outlet Name] to discuss the reality of living with this invisible disability. Thank you for your time and for helping me give a voice to the thousands of us navigating this condition. Best regards, [Your Name] [Your Phone Number] mddsfoundation.org Need more inspiration? Look & Listen! Explore our SoundCloud and YouTube channels. Find interviews with major newspapers and magazines on the Media page. Related posts: Sky, Sea & Me Alone we are Rare. Together we are Strong.
Please can you work towards establishing a genetic coding for those of us with familial/hereditary MdDS and consider that there may be a polygenetic root for some of us. Reply
Thank you for your thoughtful question. The MdDS Foundation encourages and supports research into the underlying mechanisms of MdDS. Our approach remains centered on evidence-based research and patient support, to narrow the focus. Here is how we are moving toward the “big picture” view you described: • MdDS Patient Registry: This natural history study is specifically designed to collect comprehensive data, including a dedicated survey on family history. To ensure ease of use, it features simple 🔘 radio buttons and ☑️ checkboxes; you won’t be asked to remember exact dates or every detail. • Data Collection: By gathering this information, we aim to provide researchers with the necessary data to identify patterns—including the possibility of a polygenetic root. • Scientific Support: While the Foundation focuses on clinical and translational studies, the registry is being designed to capture the essential data needed to help uncover connections and reveal patterns we haven’t been able to see before. When the registry opens for enrollment, soon, participation from individuals and their family members will be vital to building this essential dataset. Reply
Evidence-based research has thus far shown that MdDS is a central vestibular (neurological) disorder. Researchers have found no scientific evidence of inflammation, nerve dysfunction, CSF leak, or any other structural or functional cause for MdDS. To understand the root cause of MdDS, we must raise awareness to increase interest that leads to more scientific research. Please use the provided template! Reply
