VeDA Partners with French Advocates to Raise Awareness & Expand Access to Information The Vestibular Disorders Association (VeDA) recently signed an agreement with the Association des Désordres Vestibulaires (ADeV), a newly formed French patient advocacy organization, to further our mutual goal of raising awareness of vestibular disorders and providing support to the French-speaking vestibular community. The concept of ADeV (yes, we know it spells “VeDA” backwards:) began forming when Yannis Benaniba, a vestibular patient residing in France, contacted VeDA’s Executive Director, Cynthia Ryan, asking how he could help support French-speaking vestibular patients. Yannis was inspired by VeDA’s Life Rebalanced Chronicles Docuseries, as well as VeDA Ambassador Johan “The Chappiness Guy”‘s podcast, Find Your Chappiness. He has also connected with Dr. Christian Chabbert, PhD, HDR, founder of GDR Vertige, a vestibular research group based in France. After some collaborative brainstorming, these pioneers decided to create a vestibular patient-focused nonprofit incorporated in […]
Danny Burns’ friend, Laurie Savino, was diagnosed with Meniere’s about a year ago. Before COVID, Laurie was a successful New York City real estate agent selling $10 million a year. As the real estate market dried up during the pandemic, Laurie also began experiencing Meniere’s symptoms. A mere year later, she’d lost most of her hearing, which has recently deteriorated to the point (less than 5% of her hearing remains) that she is eligible for cochlear implants, and she’s scheduled for surgery in a couple of weeks. Danny has been impressed with Laurie’s positivity and energy: she’s still selling real estate and using tools like closed captioning to help her. He partnered with her to hire a production team to film this mini-documentary documenting her experience. They are generously using this opportunity to raise awareness and funds for VeDA. Read Laurie’s story, watch her video below, and donate to help vestibular […]
Help Reduce Diagnosis Times for Patients with Inner Ear & Brain Balance Disorders PORTLAND, OR – The Vestibular Disorders Association (VeDA) honors P. Ashley Wackym MD, FACS, FAAP with the VeDA Champion of Vestibular Medicine Award in recognition of his outstanding service to the global vestibular community. “Champions of Vestibular Medicine are medical professionals who have had significant impact on increasing awareness of vestibular disorders,” says Cynthia Ryan, VeDA’s executive director. “Thanks to their leadership we’re seeing new diagnostic and treatment protocols that help reduce diagnosis times and increase treatment effectiveness.” “So many vestibular patients suffer for years before receiving an accurate diagnosis, if they ever get one,” says Kathleen Stross, DPT, PT, MS, CHC, President of VeDA’s board of directors. “VeDA’s number one goal is to reduce the time it takes to diagnose a vestibular disorder. We want to shine a light on these invisible illnesses so that vestibular […]
Vestibular-Friendly Family Gathering Our family looked forward to gathering for the holidays in December 2021. It would be the first time the five of us–I, my husband Robert, our daughter Sarah and her husband John, and our daughter Betsy–would be together in two years, due to the COVID pandemic. It was also the first time we’d all be together in our new home in the North Carolina mountains. We expected some challenges since we knew from experience that a few additional people in a house can make it louder and more confusing, throwing me off-balance due to my vestibular problems. In addition, our new house is 15% smaller than our previous one, which could make it feel even more crowded. Advance Preparations To mitigate any potential problems and pave the way for a smooth and enjoyable visit for all, we made some preparations. Three-day rule: Are you familiar with Benjamin […]
Visual Snow Syndrome (VSS), is a chronic, debilitating, and persistent neurological condition that affects a person’s vision, hearing, and brain function. The primary, and shared, symptom of VSS sufferers is Visual Snow. This resembles “TV static” and is perceived and seen as millions of moving and flashing dots over the entire visual field. This static is seen whether the eyes are open or closed. While Visual Snow itself is not as rare as once believed, Visual Snow Syndrome is. The full-blown syndrome carries multiple symptoms with it, in addition to the symptom of Visual Snow. WHAT ARE THE SYMPTOMS OF VISUAL SNOW SYNDROME? While the primary symptom of Visual Snow Syndrome is Visual Snow (static vision), there are numerous other symptoms that accompany this condition. Many of these are seen in migraine sufferers, making diagnosing VSS difficult for medical professionals who do not have a full understanding of the condition. […]
Rochelle Matheson represents VeDA at the World Orphan Drug Congress “As we know, the rare disease area has historically been distinguished by unique challenges, but also incredible triumphs. Particularly because of advancements in precision medicine that have not been seen elsewhere within healthcare….But what I know unites all of us in this room, is that shared commitment to advancing care for individuals with rare diseases. One person at a time, and an entire community.” – Shannon Resetich, Global Franchise Head, Rare Diseases, Sanofi Genzyme World Orphan Drug Conference (WODC) Back in August of this year, I had the honor of attending the World Orphan Drug Congress as a representative of the Vestibular Disorders Association. This conference, coordinated in part by the National Organization of Rare Diseases (which VeDA is a member of), brings together those in the pharmaceutical and research worlds to discuss their work in rare disease, and invites […]
Holidays can be challenging for vestibular patients for many reasons. Family and social engagements often cause sensory over-stimulation, resulting in fatigue, and often triggering symptoms (e.g. dizziness, vertigo). In addition, for some, high sodium foods can be a trigger. As a result, many vestibular patients avoid social situations altogether. How can you enjoy the holidays without undue negative consequences? Here are some tips for the holidays shared by other vestibular patients. PARTIES/SOCIALIZING Social events can be the heart of any holiday celebration; they can also be very draining and exacerbate your vestibular symptoms. Taking a few precautions can allow you to participate without feeling totally wiped out the next day. Arrive early and leave early (if you feel you need to). There may be fewer people and therefore less noise early in the evening. It may also be easier to find a place to sit. Use the “spoon” method to […]
September is Fall Prevention Month, and Urban Poling is drawing attention to factors that contribute to falls related to imbalance. As we age, we grow more susceptible to impairments in vision, the vestibular system, proprioceptors, all of which play a large role in balance. Additionally, balance is impacted by muscle strength, joint mobility, and foot strength. Conditions such as arthritis contribute to joint weakness further exacerbating the risk of falls. The number of individuals who fall increases exponentially with each decade after the age of 65, and falls are the leading cause of injury among older adults. Additionally, vestibular conditions aren’t exclusive to older adults; many young individuals can be impacted as well. In children, the vestibular system can be disrupted, resulting in symptoms of vertigo, dizziness, oscillopsia, gaze instability, and delayed development or diminished balance and other motor abilities. However, falls can be prevented; many steps can be taken […]
A Research Study Dr. Laura Smith, a lecturer in Psychology at the School of Psychology, University of Kent, collected information from people suffering from a vestibular disorder in the UK who had also been diagnosed with COVID-19. Following is a summary of this project. Aims of the project In this project, how people with vestibular disorders had been affected by the Covid-19 pandemic was explored. They wanted to find out about changes to their health during this time, as well how their everyday lives and routines had been impacted. How we collected the data They designed an online survey which asked about basic demographic information and health conditions. The survey also captured what vestibular symptoms people experienced before and during the Covid-19 pandemic, and what vestibular healthcare they had received throughout the pandemic. Questions also covered daily activities, work, and work-life balance. Some questions were in a multiple-choice format, while […]
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PORTLAND, OR– July 29, 2021 – Life Rebalanced Chronicles documents the stories of nine individuals who did not expect to be knocked down by a vestibular disorder. All of them looked fear, anxiety, and loneliness in the face and said, “You will not define me.” Their message of hope is for everyone who struggles with invisible chronic illness or are navigating life’s challenges. The six-episode docuseries airs weekly starting August 10, in conjunction with Balance Awareness Week (Sept. 19-25, 2021). The series is a collaboration between the Vestibular Disorder Association (VeDA) and Kimberly Warner, filmmaker and founder of Unfixed Media. In 2015, Kimberly was diagnosed with cervicogenic vertigo and Mal de Débarquement Syndrome (MdDS) that manifests as a constant rocking motion. The docuseries features nine vestibular patients who are learning to live with vestibular disorders. They explore parts of the human experience impacted by their diagnosis – mind, body, spirit, […]
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