20 years of Reuksmaakstoornis.nl

Reuksmaakstoornis.nl, the Dutch patient association for smell and taste disorders, was founded 20 years ago! On October 3rd, this was celebrated during the annual ‘Vriendendag’. Kirsten Jaarsma, chairperson of reuksmaakstoornis.nl, reports on this day:

Our association was founded 20 years ago in October 2000 by a small group of people suffering from anosmia. Our association was then the first in Europe representing the interests of people with smell or taste disorders. 20 years ago we felt sometimes like a voice in the wilderness, but step by step we connected with ENT specialists, the world of science and of course most important: with people who suffer from the condition.

Picture shared with permission. Photograph (c): Geerke Vermeulen/Reuksmaakstoornis.nl

Who would have predicted 20 years ago that 2020 would bring such massive attention on smell disorders being the main symptom of the Covid-19 virus, with interviews on Dutch national television and in the national press? Also: who would have thought that the global GCCR partnership of over 500 scientists would be set up in no time?

20th anniversary

In these turbulent times we celebrated our 20th anniversary with our members and our contacts. Normally we organise our annual membersday (we call ‘Vriendendag’ or ‘Friends off the association day’) with a nice, buzzing crowd of around 120 people. With workshops, a special ‘anosmia proof’ lunch and lots of sharing of experiences, tips and tricks. Instead, on October 3rd, we had two groups of only 30 people, strictly adhering to the 1,5 meters distance regulations, attending our morning and afternoon programme.

The event took iplace in a ‘hybrid’ fashion, as is common these days: part of the audience is physically present, but a large part is viewing it online. Here we see Pepijn Schonenveld. Picture shared with permission. Photograph (c): Geerke Vermeulen/Reuksmaakstoornis.nl

It was tot the big celebration we hoped for, but we are pleased we could at least organise this modest gathering. A nice out-of-the-box effect of Covid-19 was that we arranged our first live stream which was visited by almost 400 people watching our interesting programme from home! As a famous Dutch soccer player once said: every disadvantage brings its own advantages!

Of course Covid-19 was one of the trending topics on the agenda. Dr. Sanne Boesveldt presented the first results of the GCCR questionnaire findings and ENT-specialist Dr. Remco Cardinaal shared the latest news from the Smell- and Taste Centre in Ede and his views on smell disorders due to the Covid-19 virus. The Smell- and Taste Centre celebrated its 5th anniversary this year.

Sanne Boesveldt shares the latest findings on the relation between COVID-19 and smell and taste disfunction. Picture shared with permission. Photograph (c): Geerke Vermeulen/Reuksmaakstoornis.nl

Norman Mazel, coffee expert and unfortunately also experienced in smell disorders due to Covid-19 shared his story together with Hilde Taverne who lost her sense of smell in March this year after a skiing holiday in Austria in the height of the pandemic. Their stories about their struggle with the effects of parosmia and phantosmia on their daily lives were impressive.

Discussing the impact of COVID-19 and smell loss: Kirsten Jaarsma (on the left), Hilde Taverne and Norman Mazel. Picture shared with permission. Photograph (c): Geerke Vermeulen/Reuksmaakstoornis.nl

Of course we shared highlights of the last 20 years and shared our vision for the coming years with the audience.

We ended our 20th anniversary Vriendendag with a special show by stand-up comedian Pepijn Schoneveld, a congenital anosmic. Pepijn gave the audience his hilarious view of life without smell and positive approach on acceptance and having to live with a disorder. Our conclusion was (and sorry for expressing this in Dutch…): Reukloze humor is veel leuker dan smakeloze humor!

Pepijn Schonenveld during his sketch on tasteless humor and the ‘new normal’. Picture shared with permission of the portrayed. Photograph (c): Geerke Vermeulen/Reuksmaakstoornis.nl

National campaign ‘smell loss after covid-19’

It is worth mentioning that we launched a campaign mid September. The main goal of the campaign is to seek attention for smell disorders caused by Covid-19 and create a space for people who suffer from the disorder where they can share experiences. On a special Facebook group (https://www.facebook.com/groups/reukverliesnacovid19) we have around 2500 members sharing experiences. This may sound impressive, but is probably only the tip of the iceberg. We are working hard on creating content such as FAQ’s, ‘tips and tricks’ on dealing with food and eating, as well as general information that can help people to cope with the impact of smell loss.

We hope that next year we can have our 21st annual Vriendendag under normal circumstances, including workshops, ‘anosmia proof’ lunches and most important: sharing experiences face-to-face.

When you are interested to make a presentation or share research with our crowd, please let us know!

Kirsten Jaarsma, chairperson Reuksmaakstoornis.nl

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