In September 2018, I sent a letter to prof. dr. Nicolás Peréz Fernandéz, president of the Barany2020 event on vestibular disorders, which will take place in September 2020 in Madrid. In my letter I asked him to talk with us, patients - and not only about us - and make 'Barany2020' a #patientincluded event. GOOD NEWS! He heard me and invited me...
... to organize a patientperspective symposium @Barany2020
With this symposium I will adress a positive message towards vestibular professionals. We agreed I will start from my personal case – as ex-patient with 15 years of misdiagnosis and finally a cure – to zoomout – from my experience while 10 years of raising awareness as Dizzy Me and Founding President of House4balance – to the experience of patients with vestibular disorders in general.
I will present my helicopterview on the challenges we all face and experiences we share on a worldwide scale and ask vestibular professionals to turn these challenges into a win/win for both patients and clinicians working with these patients. I’ll do this with the help of 2 vestibular experts.
If you can dream it, you can do it
While high level vestibular experts are doing the best they can to do research, make clear guidelines and criteria ‘for each disease’, to encourage multidisciplinarity and keep insights up-to-date, we miss a helicopter guideline to support our GP or the Emergency department, where most patients have their first consult. Those doctors report that they are often poorly trained in vestibular and neuro-vestibular conditions. “Misdiagnosis rates in the Emergency Department for peripheral vestibular disorders are estimated in the range of 74 to 81%.” [Neurologic Clinics].
Of course we cannot expect first line clinicians to become vestibular experts. There are too many diseases in this world. But I have a plan in mind, to stop #MUS #PUN #DEN (#MUS means medically unexplained symptoms - #PUN stands for patients' unmet needs - #DEN means for doctors' educational needs). And the vestibular professionals at Barany2020 have the key in hands to help us. In Belgium, I now have one year to continue and finish my work with a multidisciplinary team of experts to make a decent overarching guideline/protocol for vestibular diseases. We hope to land at Barany2020 with a blueprint which is up-to-date, helping first line clinicians in their differential diagnosis and decision scheme. We also hope we’ll allready have some success stories to share. This way, Barany2020 will give us a forum to share our patient experiences, to sell our idea on how to overcome these challenges worldwide, and to have this guideline adopted. This way we will be able to prevent more misdiagnosis, shorten time towards correct diagnosis and appropriate treatment.
The outcome?
Patients who are now disabled in most cases, would have bigger chances tomorrow, to get their lives back, their family life, a career, their pride. This should have as a result ‘a smaller socio-economic cost’ for society.
A win win for all. Are you in?
All I need from you is get more signatures, more shares and more comments for our petition for change.