MdDS Foundation

Two years and 28 days with MdDS after getting off a transatlantic cruise. I found the MdDS Foundation very quickly and have gained so much from it. The first six months were panic not knowing what was really going on and seeing doctors that knew nothing and didn't care to learn anything. I finally did a telehealth visit with Dr. Beh this last May. Prescribed some stuff and lots of supplements. Began to feel better and after 1.5 years you kind of get used to it too. I would not have known about him without the MdDS Foundation.

With much encouragement from folks on here to live your life and do what you can do we decided to do a Christmas cruise. We left really early Monday morning and flew Columbus, OH to Charlotte, to San Juan. No problems--AA the day before their meltdown, thank goodness.

It's now Friday and we've been on the ship since Monday night. The first two evenings were slightly rough seas--I did much better walking then most people I've seen. Our daughter and spouse came with us. She's a Spanish teacher and has been to San Juan so she walked us all over the first day--15,000+ steps. I can say I'm not feeling any better and I'm not feeling any worse.

I'm heading out in a few hours to try SNUBA diving with the kids. I might not be able to go under water but I can at least be at the ocean. I should add that I'm 71 years old.

I've been on the MdDS journey for over eight years, with so few answers and such little meaningful support. Finding the MdDS Foundation this year has been such an incredible blessing. Knowing that there are others experiencing the same thing I am, and that there are people working on researching to find more answers, is so encouraging. And now that I've found a provider near me who partners with the Foundation, I have so much hope and optimism.

Finding the MdDS Foundation website in August 2019 was like finding the key to a lock. I'd been experiencing debilitating symptoms for four months after I'd come back from an overseas trip. I finally self-diagnosed that I had MdDS by reading the info on their website. The website also used to have a directory of medical experts who were treating people with MdDS, and I was able to contact this physician's office. I still see him to this day. I've also found the website helpful with basic info about coping with MdDS and also with providing current research on the condition. The Facebook group has also been a great community for support and personal experience.

I took a cruise Nov 2023, and when I got back the world was still moving. Eventually in February 2024 I saw a neurologist who diagnosed me with MdDS. At that time I did not even realize MdDS was a thing. The website mddsfoundation.org was a great resource for better understanding the condition I had. It had a video I could point people to in order to try and explain the condition I was experiencing. It had a scale I could use for tracking my symptoms and communicating how I was doing to my family. It had brochures I was able to print out and share with my other doctors who had never heard of the condition. It also has an active Facebook community where I was able to connect with other people and not feel so alone. This organization helped to give me the tools for coping with the situation I was dealing with, and I honestly don't know how I would have coped without this support.

Finding the Mal de Debarquement Syndrome Foundation website in August 2019 was like finding the key to a lock. After reading the information about the symptoms I was having, I self-diagnosed the condition I’d been having for four months. At the time, the website posted names of medical experts who were familiar with MdDS, so I was able to use that info to get to the doctor I still see today. I’ve also found the other info very helpful—from basic stuff to research articles.

I have had MdDS for 9 years now. This organization has been my rock in times of trouble. They have linked me to the specialists, gotten me through days of depression and doubt and provided the inspiration to carry on. The Foundation proactively seeks to further the research and inform the public and the medical profession about this rare syndrome. I have taken the brochures to providers and people that I have met who are skeptical. The MdDS Foundation is our advocate and support. They truly are the best and I am grateful for those who administer the list and move this organization forward.

The MdDS foundation has been so important for MdDS warriors like me.
The support and information they provide help us make our health care providers understand our syndrome faster.

I’m so glad the foundation exists! I’ve had MdDS since 2018. I decided to start a candle company since I could no longer work with my symptoms. It’s small, it’s just me, but it gives me a purpose after MdDS took some of that away. This charity allows me to give a portion of those sales back. To raise awareness and to allow others to donate to this rare disorder and help find a cure. This nonprofit has provided so much research and information for MdDS warriors, their support is overwhelming.

I have had MdDS for 10 years, it started with a long car ride. I was bouncing,swaying and bobbing. I was frightened and full of anxiety and stress, which only makes it worse. I started to research my symptoms and when I got on the MdDs site i saw all my symptoms. I was relieved to find I was not alone and had some guidance on what to do next. My symptoms are low now but I often go on the sight to see if there is any progress. Thanks to sll who keep the site running, you make a difference.

Great source of info for this little-known condition!

MDdS website and FB group has helped me so much with reliable information and support. I had never heard of this syndrome before and had so many questions that were answered by the website. And the FB group was helpful in making me feel like I wasn't alone. Don't know what I would have done without them!

MdDS manifested on December 28, 2018 after the perfect storm which included a stressful drive on I95 on the way to my first ever cruise where a storm raged while on board. My body/nervous system, already damaged from chemotherapy, disembarked that ship forever changed. The panicked thought of "Something is VERY wrong," led me to search and discover this organization which not only gave insight and validation to what I was experiencing, but reassured me I was not alone. It was and is my number one resource. It's been a journey with bad and better days. My hope . . . Psalm 107:23-32

I was diagnosed with MDDS in January of this year, at 35 years old. My life was forever changed and I thank God for allowing me to come across this foundation to know that I am not alone and get tips and advice to help cope with how scary and life altering this syndrome is on myself and my family. I hope to one day be the wife and mom that my family deserves again, but having this source helps us all get through each day and I pray that one day it will help lead to a cure for this terrible syndrome. Thank you for all you do.

It’s been almost exactly a year and half since my life changed forever. When I first started with symptoms it was extremely difficult to find anyone who understood what I was trying to describe for my symptoms. I was hospitalized for 2 weeks and still misdiagnosed. It wasn’t until I had a consultant with an extremely knowledgeable neurologist that suggested this disease. The foundation was only place I could find information about various methods and resources for treating the symptoms. I frequently add asked providers to look at their website to educate themselves on this rare condition. I learned about their support group and learned how many other people are suffering from this debilitating disease and how they cope.
The resources that they provide keep us hopeful that someday there will be a cure.
I hope to do some volunteering to give others hope as they have given to me to be able to keep living with MdDS.

My story began March 2019 I took a cruise to the Bahamas from cape Canaveral, Florida. I had taken a cruise six months prior to Alaska and had no problems at all. I’ve always had what I call not the best sea legs even after getting off of a pontoon boat, most of my life, but I could always get through no issues and no issues after Alaska cruise. When we traveled to Michigan by air after Bahama cruise i wasn’t feeling well and asking all the people we went with if they felt funny and they all said no once I got home I did what most all of us do started at the ENT from their neurologist from their back to the NT MRIs Botox shots Medication‘s. This is definitely a beast and it’s not for the week. I push through every single day I either walk or ride a bike almost every day. My husband and I had to change our life. We sold our ranch bigger home that we thought we would retire in to purchase a condo and a little place in Florida because if I can’t walk or see the sun, I go into a small depression. We all need to see the sun. I am thankful that I was able to do that but it’s definitely a life change that you somehow have to accept And you can have your pity parties but you have to get back up the next day and do it again keep busy or as busy as you can. I know it’s difficult for many I pray every day that the scientist or somebody can figure it out. Thanks so much to this group it brings many people out of what they feel is the end Hang in their everyone take one day at a time

Mdds foundation is how I found my incredible doctor, how I even began to understand what this thing is and how I was lead to my diagnosis which ultimately made a lot of things easier logistically. What an amazing group that does so many wonderful things to support us but mostly keeps us in community which with Mdds can be one of the most challenging parts. I feel seen and so much more connected and never alone because of the work they do.
Thank you from the bottom of my heart.

After a flight this summer I couldn’t figure out what was wrong with me. After numerous doctors appointments, a student PT intern found an article that described my symptoms. I then went to research this new word, MdDS. I’m thankful for the information I’ve found to help me cope!!

The MdDS Foundation has been very helpful to many people who feel alone and isolated, both in their lives and medically. They provide members with relevant information as they receive it and, in a sense, serve as a lifeline to those suffering from this rare condition. I have lived with MdDS for over 4 years. I have been refused care from the only knowledgeable physician in my area because the hospital was unhappy with the extra effort extended by the specialist in understanding and treating me. I have had to rely on the information provided by the Foundation and others on their support group for various different treatment ideas that I could access myself or discuss with less knowledgeable physicians.

In a world where the medical practices failed me more than they helped, the MdDS Foundation provided me, and my doctors, the information and help needed to treat this terrible syndrome. I was ready to quit my job, drop out of my Master's program at an Ivy League University, and just give up. But the support, information, and historical knowledge of this organization kept me going and strong enough to seek solutions for myself. I am where ai am today because of the MdDS Foundation.

Immensely grateful for this resource! They provide relevant, modern, and relatable stories and information consistently. It makes me feel a lot less alone living with MdDs.

thank you for spreading information about MdDS. some days I feel like I'm going insane. My life has been turned upside down by this illness. I can't go into most stores, the gym, or the place I work. I have been stuck at home since getting this. We need answers and treatments. I need my life back. My kids need their mom back.

Thank you for being a reliable source of informations. MdDS since 2021.

I've had MDDS for over a year and the MDDS Foundation has been a great source for support, inspiration, advice, and research articles. Most helpful for me has been advice on how to handle triggers, getting better sleep, useful exercises, remission stories. There is nothing better than hearing from others that are going through what I am dealing with. I so happy I found the foundation.

I began having symptoms in early November 2020 at the end of having COVID. Finally went to an ENT in December. He dismissed MsDs since I had not been on a cruise. He ordered a VNG which showed bilateral vestibular weakness and referred me to a Neurotologist. He agreed with the diagnosis and ordered an MRI (normal) and 6 weeks of Vestibular Rehab. 5 months later I was greatly improved and for 15 months was basically free from the worst of the symptoms. I still did not function well in the dark or on uneven surfaces. In July of this year while on vacation I began noticing a return of the rocking, bobbing and swaying in the evenings and by the time we got to the airport to fly home I was fully symptomatic 24/7 again. I returned to my original ENT after 4 months of constant symptoms. He dismissed my self diagnosis of MsDS and planned to send me back to the Neurotologist. While leaving the parking garage after my appointment He called me on my cell phone to tell me the Neurotologist believes I have MsDs. Now I am awaiting a telemed appointment with my Neurotologist to make a plan moving forward.
This site gave me support and information to present to my doctor to get what I believe is an accurate diagnosis. It is nice to know you are not alone and that there are others who understand what life is like with this condition. I will not stop moving forward in hopes that I can achieve "remission " again.

I got MdDS from a cruise in 2019. I could not find a Dr to help me or even anyone that knew what it was. I googled my symptoms and MdDS came up. I found the MdDS foundation and the knowledge I received helped me more than any Dr could. I was able to find a Dr through this foundation to diagnose me. The support I received helped my mental health tremendously. I am forever grateful to this foundation.

I don’t know what I would have done without this site snd the MDDS Foundation. All the people are so kind snd helpful. It’s a good community helping each other. Hopefully one day we will all be in remission. Namaste.

I am so thankful for this MdDS Foundation website. I didn’t have a name for my “sickness” going on 20 years, suffering from imbalance, fatigue, stress, neck pain, and head pressure. There are so many medical professionals out there that don’t even know about this disease. I tried to explain my feelings of unsteadiness, feeling like I was walking in some kind of funhouse that had moving or tilted floors to my doctors. I even told them how I was only comfortable when I was driving. No one helped. Finally, I met another person that had similar imbalance problems and had been diagnosed. Once I knew “MdDS”, I had a sense of empowerment! I am not alone. I can read about others with MdDS, find links to learn about triggers, therapy, medications, and advancements. I depend on this lifeline and keep hoping for remission.

When I was in Hong Kong in 2017 I had started a new exciting job teaching English and the bosses had kindly put me up in a lovely hotel with phenomenal panoramic views across the harbour looking towards China.
The hours were long and days at the new tuition school in the basement of a local mall. I went to a from my hotel room on the 29th floor using high speed lifts about four times a day.

Towards the end of the free fortnight of accomodation the building seemed to flex a lot but I thought that’s clever engineering catering for typhoons. Then when I moved to my new apartment that building flexed too and the bed I slept on rocked like a raft. I was quite isolated because most people spoke Cantonese including the doctors. I googled feels like I’m sitting on a raft and this instantly brought up a reassuring scientific explanation of what was happening to me. It also accessed a community of friends with extremely useful tips. Hong Kong was listing like the Titanic for the next sixteen months but I knew I wasn’t crazy. I owe them everything for being so reachable and so supportive. And now I’m in remission and it only appears briefly when I don’t sleep now I’ve returned to Australia ������������

Bless you and all you do! I've suffered with the symptoms 5+ years. Doctors brush off my concerns and won't listen to what I'm telling them. It was such a relief to find your foundation's website and Facebook page...it's not "all in my head". Thanks to you, my husband FINALLY understands what I couldn't put into words. Keep up the good work...your research and support are priceless!

Most doctors have not heard of MdDS. It is great to have a credible source to steer anybody for information. Thanks for being here, MdDS Foundation!

What a great resource! So helpful to know I’m not alone.

Saw lots of doctors from a variety of discipline and MRI etc. They conclude it all up in your mind. So it’s was a relief when I stumbled on this foundation and immediately realized what I was suffering from. I live in Malaysia and no one seem to know about MdDs. Really grateful to this foundation for the sharing of stories and helpful ideas. Thank you !

The foundation and the information, education and support it has provided me, during a dark as terrifying time has truly been life changing. And while I’m not in remission, my MdDS is no longer dark or terrifying or life defining.

I am so grateful to have found the foundation and continue to rely on it. Providing me with structure (symptom scale) and meaningful useful tips let me measure my improvement in a meaningful way. Thanks to the foundation I’ve gone from a 5-6 to a 0-2 with more zero days than 2’s and even then, know how to handle a bad day in a way that would not have been possible without the foundation.

I have had the utmost difficulty finding an appropriate medical provider and when I finally did find one his boss terminated me from his care. The only legitimate source of information I have received on MdDS has been through the foundation

When my symptoms began, I began researching and came across the MdDS Foundation. I attempted to explain to my general practitioner at the time but she said she'd never heard of it and that I was probably suffering from low blood sugar, hormonal imbalance, anxiety or long Covid. My ENT diagnosed me on my first visit, I was grateful he knew about MdDS and took it seriously. The foundation has been helpful as I continue to undergo testing, see a neurologist and also see a vestibular physical therapist. I hope the foundation can continue to raise awareness and help fellow "rockers" like me.

I am so grateful to have discovered this organization. My diagnosis of MdDS has taken three months of doctors, nurse practitioners, emergency room doctors, and two ENTs. In August, I drove to a cottage in Northern Ontario and had to drive on a 2 km road that was some of the worst off-road driving I’ve ever done. I drove it three times in one evening (to fetch potable water, etc.) and woke up seasick and vomiting the next morning. I was severely ill for several days, then it remitted, then I went for a hike, and it happened again. I was vomiting for another few days, and constantly feeling like I was on a boat in a storm. It went away after a week, and then a neighbourhood walk triggered it again and I’ve been sick ever since. I can’t work (I’m an elementary teacher) and I’m going crazy with anxiety and depression. I am so glad to know I’m not alone. Thank you for helping make more people aware of this horrible syndrome.

I have learned so much from this group, after being diagnosed with MdDS and getting nothing more than a rx and
Good luck to you from the doctor. The support from this group is incredible. They have been a great fountain of information for this obscure syndrome that most have never even heard of, and it has brought me immeasurable comfort in knowing I’m not alone. Thank you for your work! Olga

I have suffered from mal de dembarquement syndrome for almost 7 years. This non profit has been a source of good information that is science based as well as a support emotionally when needed for this rare incurable syndrome. They are there as a support to doctors and others as well as family members and caregivers. Since this is so rare the foundation needs to be the one stop shop for anyone affected by the syndrome and they do it with integrity and caring. My symptoms range from mild to extreme in a matter of seconds and knowing I have a resource for information and support can sometimes be the only source of sanity in my day.

My Name is Rosalind Miale, I have had MdDS for the last 7 years, I was 64 at that time. My motion came on from car rides I took in that summer. We drove from NY to Vt for a wedding. After the 3-4 hr ride I got out of the car saying that I was still moving, swaying and bobbing. I didn’t think much of it, figured it would eventually stop, but it didn’t.
I ignored it danced and drank at the wedding- big mistake!
We returned home after an overnight, still moving and I had another wedding a week later 1&1/2 hrs away. Foolishly I danced and drank again, still thinking it would stop.
One week later someone in the last wedding- family, passed. I had to go back for the wake.
That was the last straw, I was holding on to walk and was frightened. This was family, how could I not go to the funeral, so I did.
After these events I was at level 8, and I had great regrets for my actions, too late.
Feeling like a lost sole, I researched symptoms, Mdds foundation came up, they had a list and I had them all. At least I wasn’t crazy and alone.
From their site, I looked up doctors, things I could do and felt comfort, good advice. I’ve gone to several doctors, Mt Sinai, and balance rehab.
All helped, but I still have it today, learned to watch my activity and am at level 0-1.
The MdDS foundation was and is wonderful tool for people like me.

I am so grateful to the MdDS Foundation. Two years ago I stumbled onto the site a month after I started feeling as though I was constantly walking on a floating dock and that gravity was to pull me down. I thought I was going crazy! The educational pamphlets helped me and my doctor learn about MdDS. The community that I have found because the Foundation has helped my mental health. It is so important to have others that know exactly what you are going through and provide support and advice. So many members have given me strength when my symptoms were high. I hope others feel that I have done the same for them.

This is a unusual diagnosis for so many, and it’s been around for centuries. Not enough information is shared between Dr and patients. Everyone gets their own information and assistance from others on this site to help with symptoms and to get a little hope and understanding what’s going on with our bodies. I have had MdDs since 2013, years of tests. Received my diagnosis in 2015. I still learn from others and love to share my experiences with those who suffer like I do. So much is still unknown.

Nothing has helped my MdDS more than this. Even doctors weren't sure what it was or what to do. I was happy to find all the information I couldn't find anywhere else at the time (8 years ago) and today they help by creating and having a support group that is invaluable.

I was recently diagnosed with Mal de Debarquement Syndrome by my primary care doctor who has been working with another patient who has it. She did not offer me much in the way of hope, said going to an ENT would not help, and did not offer to refer me to a neurologist or vestibular therapist. I learned the value of a team approach from this MdDS site, and am pursuing the help needed. I have learned from the good people who contribute to this site thare there IS hope, there are therapies, and ways of managing symptoms. I felt so terrible about myself after living with this the 1st month, especially since the fatigue was so overwhelming, as was the anxiety. I went from an active, athletic 70 year old to a depressed, sedentary much older-seeming person in a short period of time. The group has taught me how to manage my limited energy resources while maintaining a modified exercise regimen. They have emphasized the importance of intermittent rest, the need for more sleep, and the need to have compassion for myself when dealing with the anxiety and depression that seem to go hand in hand with MdDS. I'm not alone in this anymore. There always seems to be near immediate support & advice, and some really detailed instructions for working on balance. This group has been invaluable to me and I'm most appreciative of all the effort that goes into making this such a valuable site.

After the birth of my first child I suffered with bad dizziness gravitational pulling and swaying. I went to ENT at Bolton Royal Hospital 4 months after but I was unable to be put through rigorous tests as I was early into my second pregnancy and my symptoms had gone.
Once my second girl was born I slipped straight back into the worst bobbing and swaying (weird how my pregnancy masked the symptoms)
I went to ENT again and luckily I had a specialist who knew his stuff he diagnosed me with MdDS as he remembered reading an article about how MdDS sufferers feel ok in passive motion and I was always ok when driving or in the car. I am extremely lucky to have got an early diagnosis. Many people are not so lucky...they meet people like my neurologist who on my first meeting with no examination or review of my files said to me...

’You don’t have this silly little French syndrome, it isn’t real!’

Well I never went back to see him!

This Foundation is amazing for it perseverance in raising awareness. Hopefully one day all medical professionals will understand more about MdDS and more research can be done so we can stop the rocking ;)

Thank You to everyone at the Foundation.

I was diagnosed with MdDS in 2018. I’m thankful I found a neurologist who could tell me what was wrong with me. I could not process information, could not put words together to form a sentence, could not play a child’s game of UNO. I stared at the numbers and colors, trying to make sense of them. MdDS is horrible in many aspects. To hear there is no cure is difficult to accept. I’m thankful for the MdDS foundation and all who are doing research!!! I’m thankful the ability to connect with others who suffer with MdDS , to be able to ask questions, gather information and not feel alone in this terrible illness! I’m also grateful for all who helped me along the way as I am now in remission.

Over 7 years ago, having suffered for 2 months after a 7 day cruise, no doctors , specialists, or tests could explain my debilitating symptoms. Fortunately I found the Mal de Debarquement Foundation's website. Through resources and education, they equipped me with the information I desperately needed to find a doctor in my area (one of very few familiar with and specializing in this disorder). I was relieved to finally arrive at an accurate diagnosis, to have resources to learn more about it, and to know that I wasn't alone. I am in remission now and relapses are rare. I credit my well-being to the MdDS Foundation. They were a lifeline!

I am so very grateful for the MdDS foundation. I was able to find a local Dr through their recommendations right away. The support and knowledge I received from this group has been a great benefit for my mental health dealing with this life changing disorder. I hope we see a cure in our lifetime, it is a terrible way to have to suffer. Some of the best Medical Dr’s in the world has never heard of MdDS so I’m grateful for this foundation.

I don't know where I would be without this site. I have only met one other person who has MdDS. Most
doctors don't even know about it. I have been active for 4 years this time. It has been so helpful to find others sharing their stories and hopefully find help for myself, and share things that have helped me get through the day.

Until I was diagnosed with MdDS in 2019, I had never heard of this rare neurological disorder. I came upon the MdDS Foundation website through my own online research after diagnosis, and I was incredibly thankful to the Foundation for providing me the knowledge and coping skills to navigate my way through doctor visits, daily life, and what my future may look like living with MdDS. I downloaded the MdDS Foundation brochure, and I carried at least a dozen in my purse to hand out to my doctors, dentist, chiropractor, massage therapist, acupuncturist, neuro optometrist, etc. Most of them had no knowledge of this neurological disorder, and they wanted to learn more. I became a volunteer with the MdDS Foundation to mail brochures to people requesting them. The more people we educate about this disorder, hopefully the more research will be done to help all of us MdDS sufferers and our caregivers.

So grateful that this foundation exists. Your documentation, research and support to this unknowing disease is so important for me and. It helps family and even health care professionals understanding how MDDS impacting our life and what could help. Thank you!

Thank you MdDS foundation for the all the information and the efforts you are putting to help us fight this disorder. Hoping to find a cure soon.

It took me 6 years of on and off symptoms and countless specialists to be diagnosed with MdDS. I was so happy when I was finally diagnosed, found a treatment that worked for me, and found support through the MdDS Foundation and FB group. There is do much work that still needs to be done in this area, and this foundation is helping get the work accomplished!

I’m when I was diagnosed with MdDS my specialist told me to get in this website and Facebook. He said this is a very rare Disease and he felt like these two places were excellent for their knowledge and experience. I cannot even count the many times I have turned to this group for help. I am never disappointed!!!! Thank you for being here for so many of us!!!

Great reference for a little understood condition. It’s been helpful to know this is being worked on.

The MDDS Foundation has provided a great shared Private group for those of us who suffer with this rare disease and a very informative website full of information for the public to increase understanding of MDDS. They also fund much needed research on MDDS, educate physicians on diagnosis and treatment and work with agencies that deal with disabilities to increase their knowledge of MDDS and how it effects those who are diagnosed.

I appreciate the updates, advocacy and support this nonprofit provides to those who need it. Rare disorders need organizations to provide relevant and helpful information for supporting others and sharing with doctors.

They have been so helpful with something so few medical professionals are familiar with. So many resources and kind words makes it easier to live with something that has had so little attention.

This foundation has provided information and support as I have navigated my journey with MdDS. I’ve had symptoms for 3 years and I don’t know how I would have managed without MdDS Foundation.

I was left with no answers and so much frustration until I stumbled upon this organization. I finally found my answer and my doctors have agreed with me. This changes people’s lives forever and there has to be a cure somehow! Not everybody has an illness that is visible!

This Foundation has been such an awesome resource to help me find answers and hopefully eventually solutions to my dizziness but even knowing the right name of my rare disorder and the downloadable brochure to share with concerned friends and family and my doctors who have never heard of MdDS to help them understand what is going on with me has been super helpful.

I found the MDDS web site almost a year ago. It has helped me understand what I am going through and that I am not alone. It had also helped my family understand that this is very real plus I have learned a lot about my symptoms. It is a great place to vent when we are just so stressed out and we can learn a lot about what is going on in the MDDS world. Thank you for giving us this outlet

I am from a middle-east Europe country, here it is very weak knowledge regards mdds. I have learned a lot, and forwarded the infirmation those people who suffering mdds symtomps, but not diagnosed yet.

I was diagnosed with MdDS by a PA who didn’t know how to treat me in sep of 2019. The MdDS foundation not only provided me a doctor referral of a competent physician in my area on the matter, but also connected me with a network of other MdDS warriors like me to lean on during this troubling time. I would be so lost without them.

When I was first diagnosed with MdDS back in 2003, I felt alone, miserable, and didn't know where to turn for help. Then I found the MdDS Foundation. I was able to read the stories of others who were suffering with this malady and find suggestions for ways to deal with it. The day I found the website and read that there were others who were dealing with similar symptoms to me, I began to cry. It was such a relief to know that I wasn't alone. MdDS is the kind of disease that makes you feel like you might be losing your mind. I was able to use the site to compile a list of doctors who were open to helping, medications that had been prescribed and their potential effectiveness and other suggestions for helping to calm the seas. I did research for several months and then was able to find a doctor locally to help me. It was a great help to go in with my bag of research that was inspired by this website. I have never completely beat this disease, but I am in a manageable place. I will always be grateful for the help I got when I was desperate that first year.

I was lucky to get a prompt diagnosis by a physical therapist in our community who had completed specific training in this area. She was able to help me decrease the severity but the symptoms remain persistent. I was so thankful to find the MdDS Foundation as I was doing research on how to help myself. It was so difficult for me to describe the feelings I was experiencing and there it was in black and white. I was not crazy and knowing that there were thousands of other people dealing with similar problems lessened the anxiety and stress for me. The information the Foundation provided was a life line to hope and acceptance.

The MdDS Foundation is a wealth of information for us rockers. I went on a plane trip in 2014 and my next 2 years were full of doctors visits, misdiagnoses, and fear of what I was experiencing. Once I was finally diagnosed and found this Foundation, I knew so much more than the doctors had told me.

I'm still struggling to not let MdDS run my life, but I know through the Foundation I have the resources, and support needed to educate my peers and doctors and make it through this journey.

I’ve had MdDS for 6 years now. I was so lost and felt so alone in this illness until I found this group. The brochures they sent me for free to give to the doctors and friends were so helpful. They’ve answered every question I’ve had and are just unbelievably invaluable. I don’t know what I would have done without this group especially in the beginning years.

The MdDs Foundation has helped me cope, find doctors, and have hope as I travel my own MdDs journey. It has a caring community and strives to provide the visibility needed so this terrible condition is better funded and understood. Awareness in the medical community must grow. This Foundation has done most if not all of that work.

Thank you for all the informations about this strange and scary condition!

Th MdDS foundation has been a huge benefit as I help my daughter navigate the symptoms of Mal de Debarquement Syndrome. We have learned so much about triggers, solutions, suggestions for caregivers and valuable advice on living with MdDs.

What a terrific website. This organzation provides critical service and support to those suffering with MdDS. This organization is there for so many people who have no where else to turn. It is the most comprehensive place for families to find help. Keep up the great work.

This all-volunteer organization seeks cures for MdDS (a rare neurological disorder) and provides vital information to newly-affected patients and their families. For those with persistent MdDS symptoms, group support is available through the Foundation as are updates on current healthcare practices. The Foundation also supports biomedical research to advance improvements in MdDS diagnosis, treatment, and prevention. With hope, we strive to improve lives for those affected with MdDS.

MdDS Foundation is run by volunteers many of whom have Mal de Debarquement Syndrome (MdDS). They provide information on this rare disease, raise funds to support research and host a private facebook group and email group to enable those with MdDS, and their family members to communicate and encourage one another. The Foundation provides an invaluable service for those suffering from MdDS throughout the world.

Thank goodness for this organization’s website and information. I would not know what was happened to me.Keep up the good work.

Great website I appreciate all the information! Started my rocking journey and July and still going. I wish there was a cure and better research. I wish doctors understood more about what causes this.

I went to Hawaii in 2013 at the age of 45, this was my first time there! I don’t know if it was the airplane or the boats?
I found an ENT withIn Kaiser through this website ...she diagnosed me ...finally a doctor that understood ...while all other doctors thought I just had anxiety & left me feeling hopeless....it’s been over 6 years now and I have never been in remission. I keep active and walk or hike over 4 mi a day ...if I’m moving I’m not thinking about my rocking!

My MdDS started at the age of 70 and was triggered by an earthquake. I was one of the lucky ones, I only saw two doctors before I received a diagnosis. The ENT only knew what it was not how to cope! The MdDS organization gave me the knowledge I needed to cope and some day( soon I hope) they can give me and all the warriors a cure

This nonprofit organization keeps themselves immersed in all MdDS news and announcements. They are always there to help new people when they are just first experiencing symptoms. They direct them to the right direction and are a brilliant and reliable resource for long term MdDS sufferers.

Information from the MdDS foundation is the only reason I have found a diagnosis and am able to manage my symptoms. Like many I was being passed around from specialist to specialist with no one understanding my problem. I was exhausted, it just got worse and worse. I was researching online and found information on this syndrome through the MdDS foundation, and knew right away it was exactly what I was suffering from. I searched for a doctor familiar with MdDS and after 4 hours of testing in her office I had my diagnosis and treatment plan.
We need this organization and more like it to help raise awareness, so we can get diagnosed and treated properly.

It’s just so amazing to finally realize that you are not alone, that there are other individuals and families out there struggling and living with this rare condition.
The MdDS foundation/website also helps to get the word out to medical professionals who are uninformed and misinformed, and gives sufferers hope that research will soon show us the way to prevention and cure.

I have been coming to the foundation for support since 2008. I have had my many questions answered and always professionally and promptly. The foundation is crucial to those of us with MdDS as it is the only place we can go and know we will be understood. I cannot even imagine having this condition without the foundation existing. It is a true blessing for all of us that the dedicated individuals who started the foundation did so and that current members work so hard to keep it running.

The MdDS Foundation is made up of extremely hard-working, and dedicated volunteers, most of whom suffer from this incredibly debilitating disorder themselves.

I was lucky to get a MdDS diagnosis from a doctor 10 days after my symptoms began - the ENT who diagnosed me referenced the MdDS Foundation website in order to help diagnose me.

MdDS is so much of a rare disorder that it hardly even categorizes as one, so the need to spread awareness is crucial. The MdDS Foundation works tirelessly to help achieve that goal.

Who? knew a cruise could cause your vestibular system to go wonky and stay that way for 2.5years. Disembarking the ship I felt pretty cruddy but I just thought it was the extreme fun we had for the past 7 days. Upon returning home via airplane I still was not feeling right very off balance and then it just got worse from there to where going the bathroom was a chore. I was hopping from doctor to doctor so unsure of what I was dealing with, my ENT suggested maybe MdDS but he had never seen a case this intense and he said, "it could be possibly 6 months till the off balance feelings are gone." At the time that felt like forever and there was no way I could possibly take the symptoms for 6 months. So he began the eliminating process- still no formal diagnosis. We decided to search ourselves and this is when I stumbled upon the Foundation. It was a blessing and I am confident if we didn't have this resource we might still be searching two years later. I am so convinced I decided to offer to volunteer for the foundation. And I am proud to say I have been working alongside another MdDS warrior completing the domestic brochure mailings. It's our only resource and only way of finding others to discuss symptoms and remedies.

The first six months of having MdDS was awful!! No Drs could tell me what was wrong. When I found this support group I found a sense of comfort knowing I could now help educate the health community about this rare disorder and help myself cope better

When my daughter was diagnosed, the MdDS Foundation became a lifeline for our family. The diagnosing ENT directed us to the website. It is the ONLY source of comprehensive information about this baffling condition. I was so impressed with their website and the help it provided I contacted them about becoming a volunteer. From that experience, I committed myself to joining the Board! The board members are hardworking, all volunteers; dedicated to funding research, supporting patients, and educating the medical community -- all in the name of solving this hideous puzzle and ending the suffering of people afflicted. The board members are wholly invested in the mission of the foundation and I'm proud to work with such dedicated people.

This rare disease is very isolating so being able to read about how others are handling this affliction is very reassuring. Also, being able to ask questions of others is so useful. One of the most useful tools on this website is their Physician Referral Database so those who suspect they might have MdDS can find a medical professional to diagnose and treat them. Some people can spend months and even years trying to get an accurate diagnosis. Additionally, the Foundation raises money to support medical research into this neurological condition for which there is yet no cure or a proven theory of what causes it.

This is a group of dedicated, hardworking friendly people who want to support sufferers and medical providers. We have a sense of purpose, as many of our volunteers have MdDS themselves. We make calls, send materials, post blogs, and do it all as volunteers, because this is so important! I joined because a family member suffers from MdDS. I was delighted to discover a lively, social group of people who want to make a difference!

The MdDS foundation has helped me in so many ways. From providing doctor information for drs across the US that treat MdDS, to information research info and any new/upcoming research info, patient stories and just giving us a place to feel that we are not alone!

Having a rare disorder that most physicians have not heard of is extra challenging. The MdDS foundation has a wonderful site full of information and links to resources that extremely helpful in navigating this rocky world.

My companion lives with MdDS and has for many years. If this Foundation did not exist I am not sure what either of us would do. I often read the blog posts on the website to see how others are doing and there is a page on FB for the community.. And, my companion finds information and comfort in the support group.
Thank you for being there.

I've had MdDS for 19 years now. It is a devastating condition. I had to immediately stop work.Like so many others, I feel better in motion, but after the ride I rock and sway more.I can barely spend time on the computer, which interferes with my responsibilities as a Board member.
After several years my husband was able to set up our nonprofit with the IRS ( no lawyers).
We now have a support site, a brochure, an exciting new website, and many people are finding these and realize they are not the only ones with this condition.. We have ongoing research, which has lead to treatment, and some day will result, hopefully, in a cure!

I can say with 100% conviction that I was lost before finding the MdDS Foundation's website and learning more about this rare disorder. I had spent over a year going from doctor to doctor and misdiagnosis to misdiagnosis. The foundation is very unique in that everyone involved suffers from the disorder, yet takes the time to support each other, promote awareness and to raise funds for ongoing medical research. The organization's support groups are a great place for people to commiserate and share their stories. The MdDS Foundation is a small grassroots foundation, but they have raised over $1,000,000 in the past 3 years. I am certain that the foundation and the researchers they support are the best chance that we have for finding a cure for this rare and extremely debilitating disorder.

The MdDS Foundation has been at the forefront of education and promotion of research on MdDS since its inception. It is a haven for patients with MdDS who seek affirmation for their symptoms, a gathering place for building a community of individuals with an otherwise unrecognized rare disorder, a clearinghouse for the dissemination of information on new treatments, and a launching point for patients who want to be proactive in seeking knowledgeable care providers or participating in clinical trials.

Before I found the MdDS Foundation, I thought I would have to face this rare medical condition alone. My doctors and family weren't familiar with MdDS, so I was frustrated by the lack of support. When a friend told me about the Foundation, I immediately found acceptance and understanding from others on the Support Group Facebook page. I also found helpful information on the Foundation's website. I am encouraged by the research being done and by the Foundation's promotional efforts to raise awareness of Mal de Disembarquement Syndrome. Everyone who suffers from MdDS is grateful to have this amazing resource!

The MdDS Balance Disorder Foundation has been a godsend. I was diagnosed with MdDS in Sep 2007, now 10 years, and the foundation has come a long way with its information gathering and exposure on Social Media, Facebook, Instagram and their website. The information is so extremely helpful to not only those who are just diagnosed with MdDS, but also to those of us long term sufferers. The work the foundation is constantly doing for medical research, awareness, is incredible. I'm so thankful to have found them and proud to be a part of the board.

Volunteering for this nonprofit is truly rewarding. The other volunteers and the Foundation are selfless advocates of our rare disorder community. They understand the unique challenges of having a rare condition and provide ways to connect with others, even if they're in another country. A godsend for those who suffer with MdDS.

This non-profit provides exceptional support systems for those living with MdDS. They maintain up to date information about research that is no found else where.

This Foundation uses 96% of donations for to meet its goals of funding research and educational efforts to find a cause and a cure for Mal de Debarquement Syndrome.