“I have become allergic to the comment ‘long covid is between the ears’.” This is what Annemieke de Groot, director of C-support, says on Sunday afternoon in the Omroep Brabant talk show KRAAK. C-support was created by the government to assist patients with lung covid.
15,000 patients have registered with C-support. “We get a thousand more patients every month,” says De Groot. “And this is just the tip of the iceberg. There are so many people who haven’t found us yet because they don’t know we exist.”
“We still know so little about this condition.”
C-support is there to listen to people with complaints, but also to do research. “We still know so little about this condition. Which treatment is most useful to people, for example. Many patients were advised physiotherapy to build up their condition, but that often turns out to be counterproductive. It only depletes more.”
Fatigue and shortness of breath are common complaints. “We will publish the results of our research at the end of June, but I can say that more than 80 percent of the 15,000 patients have dropped out at work. That varies from working a few hours less per week to completely dropping out.”
“They are relatively young and healthy, but now sick and feeling at least 20 years older.”
The impact of lung covid is really huge. “In the Netherlands, by the way, we speak of post-covid in order to avoid confusion with lung diseases,” explains De Groot. “Our research also shows that it is relatively young people who are affected. They are between 20 and 55 years old and most were just healthy. It is also striking that three quarters are women.”
What also makes the impact great is that it takes a long time before people fully recover. “It often takes months and some, 1 to 3 percent, never recover,” says De Groot. It is remarkable that Brabant is overrepresented at C-support. “20 percent of our registrations come from Brabant. There is much speculation about the cause, poor air quality and the worst affected province, but we just don’t know.”
“The many reactions are heartwarming but also heartbreaking.”
That the theme of long covid is alive in Brabant is apparent from the hundreds of reactions that came in at Omroep Brabant last week after Sandra van den Heuvel sat down at the table at KRAAK. Due to post covid she has changed from a sporty young woman into an old lady who has to be careful with her energy. Her story caused a lot of recognition.
Sandra responds to all those reactions from home. “It is heartwarming, but also heartbreaking. I can’t answer everyone due to lack of energy, unfortunately. I’m recovering for a week from my performance and the reactions that triggered it. That’s why I’m staying home this time.”
Some of the emails received:
- “I’ve been fighting for 15 months.”
- “Will I ever be myself again?”
- “Everything is too much for me.”
- “I can only work half days.”
- “My life has come to a standstill for one and a half.”
In the meantime, C-support tries to help all these people as best as possible. “But”, says De Groot, “we get so many registrations that the waiting time to call everyone has risen to four weeks. It is a thorn in my side, but we will contact you.”
In this YouTube video Sandra’s story in KRAAK:
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ALSO READ: Sandra (46) has Long COVID: ‘I’ve been hoping for months that it will get better’