For all of us with vestibular and/or neuro-vestibular conditions there are many ways we can take action to avoid misdiagnosis, raise awareness of effective treatments and spread the word about the need for more research. Here is a list of some of the people currently involved with taking action:
Tania Stadsbader (Belgium) Tania is an ex BPPV patient enjoying a second life without vertigo. For 15 years she was misdiagnosed. She is the author of the book, ‘Dizzy Me, shedding light on balance’ involving an innovative partnership between doctors and patients (coauthor prof. dr. F Wuyts). She is also a VEDA Ambassador, working with doctors and patients to raise awareness about all vestibular conditions. Tania started campaigning after a life-changing surgery in 2008 - via website dizzyme.eu, a Facebook page and my authors page and Twitter.
Verony Manders (Netherlands) is striving for a multi-disciplinary approach for 35 years, based on the principle that our balance is a coming together of the 4 sensory systems explained in this petition. For 35 years she was misdiagnosed and mistreated and she pays a high price for this; so she is highly motivated to do everything she can to ensure this doesn’t happen to anyone else. Now she asks ENT, neurology and ophthalmology to work together. She raises awareness with her page Eerlijk over Evenwicht.
David Morrill (USA) is a stroke survivor and works with a team of Healthcare professionals led by John Hopkins University to help facilitate the difference between acute vertigo and stroke and the propensity to be a diagnostic error in the Emergency Room setting. He is also a VEDA Ambassador.
Tamar Schwarz (USA) is blogging on 'the invisible factor' of our disorders. Vision plays a key role in the entire system of balance. She is also a VEDA Ambassador.
Kim Striber (USA) was once a nurse, caring for patients. Today she is a patient needing right care. Her life had been filled with outdoor adventure before she got her Central Vestibular Disorder diagnosis. She now runs a page TrekToBalance. She is also a VEDA ambassador.
Polly Moyer (UK) campaigns for more awareness for rare conditions and for the organisations set up to support and empower 'zebra' patients. She has blogged for several of these organisations and gives presentations about rare conditions to medical students. In May 2016 the BMJ - formerly the British Medical Journal - published her article 'Healthy approaches to rare conditions' . Polly is also the co-founder of Action for MdDS UK.
Margaret Byrne (USA) was a Certified Occupational Therapy Assistant (COTA), working with children with Neurological, Sensory, and Developmental Issues. She was misdiagnosed for one year and now has a chronic Vestibular Disorder and blogs about living with one. She blogs under the name Sneezemedizzy and she is also a VEDA Ambassador.
Richard Brinkman (Netherlands) runs a page Evenwichtblog.nl sharing his search for a right diagnosis and cure. After years of misdiagnosis and disability he finally received the accurate Vestibular Paroxysmia diagnosis and an appropriate treatment in Belgium. He can soon celebrate his first year 'dizzyfree'. How wonderful is that?
Beth Rye (UK) is a young woman who has been suffering from an extremely rare inner-ear condition called superior semicircular canal dehiscence (SSCD) since June 2013. Beth’s symptoms started at the age of 23, as she was just completing her nursing degree. After 18 months of trying to get a diagnosis, 14 weeks in hospital and two failed operations, she was left with very few options in the UK. Her brother started the Getting Beth Better crowdfunding campaign to raise money needed for Beth to travel to Boston to be treated for her condition. Beth had surgery in July 2015 and is still receiving treatment.
Liesbeth Duits (Netherlands) is a very young woman suffering from an extreme vestibular condition. Her illness started in 2011, but even today no doctor has been able to find the cause nor treatment to get her better. She has a blog Hearme2 which means 'hear me out' and tells us about her endless search for appropriate diagnosis / treatment. "Most frustrating is that a patient is no longer a person but just a number. The struggle against rigide systems and doctors who don't analyze my illness as a team. Not looking at me as a person. And when they don't, I am left with no options for a treatment."
Joni Redlich (USA) treats children with vestibular disorders (as a pediatric physical therapist). She has a vestibular disorder too and she was even misdiagnosed for 10 years. Today she turns that bad experience into helping others
Jean-François Carrier & his wife Camilla (Switzerland) have a young child with vestibular issues. They are the founders of the Children's Vestibular Disorder Association - www.cvdassociation.com - uniting parents of dizzy little people
Ignacio Novoa Cornejo (Chili, South America) was only 10 when he experienced his first vertigo crisis. Doctors reported he had a - bilateral - congenital malformation in the inner ear, with moderate hearing loss and non-stop from dizziness. He decided to devote his life to studying and rehabilitating vestibular patients. Today he is a kinesiologist specialized in vestibular rehabilitation and a professional member of the Vestibular Disorders Association (VEDA) and raise awareness on social media. Check his facebook page.
Philippa Thomson (UK) is a researcher, writer and editor. She has bilateral SCDS and spent nearly four years getting a diagnosis. Her first SCDS surgical repair in the UK (2008) was unsuccessful and she had to travel to Louisiana for a series of further operations with Dr Gianoli at The Ear & Balance Institute. In 2016 Philippa published her memoir 'A Hole In My Life. Battling Chronic Dizziness' which aims to help people with inner ear disorders. She won an award for her essay for The Meniere's Society about the over diagnosis of Meniere’s disease. Philippa is set up the SCDS Society in 2017 promote research, raise awareness and provide reliable information. The prevalence for SCDS was estimated in 2016 to be 1 in a 1000 people. Follow @PhilippaThomson on Twitter.
Whether small or great, you can take action too! We encourage you to do this by:
- Increasing the visibility of ‘Dizzy Me’ posts by commenting and sharing via Facebook and Twitter.
- Encouraging doctors to read ‘Dizzy Me’ both directly and by sending them postcards.
- Blogging about your own experiences and/or participating in fora such as Inspire (the Invisible Disabilities group)
- Becoming a VEDA ambassador (www.vestibular.org)
Remember – although we are all different and come from many varied cultural backgrounds we all share a common goal: good health.