Platform launch to track new coronavirus-related chronic lung disease
The Dutch Lung Fund launched a new platform to keep careful track of a new chronic lung disease noticed in patients who had the coronavirus. The Lung Fund hopes that this platform will prevent patients from walking around with misunderstood symptoms for years, like happened with Q fever. And that the platform can link them to medical care and scientific research, director Michael Rutgers said to Trouw.
"We are sure that a large new patient group is approaching, and we have to pre-sort it, but of course there's a lot we don't know too," Rutgers said to the newspaper. Many recovered Covid-19 patients are left with scarring in the lungs, that causes a kind of pulmonary fibrosis. Patients can also suffer from thrombosis. But exactly what the long-term effects of Covid-19 will be on patents lungs, will only be revealed in years to come. The medical community named the disease Covid Associated Lung Disorder (CALD), and it is now joining asthma and COPD on the list of chronic lung diseases.
In order to closely monitor the development of this new lung disease and help patients as well and as quickly as possible, it is essential that the mistakes made with Q fever is avoided, Rutgers said. Q fever spread to humans from goats, like the coronavirus likely spread from bats. Patients who recovered from Q fever ended up going to different specialists with different symptoms, without anyone realizing for years that the symptoms had the same source. Time was wasted and patients were left untreated and feeling unrecognized, Rutgers said to the newspaper.
The Lung Fund therefore launched a platform, where patients who recovered from the coronavirus but still struggle with symptoms can register. There they can talk to other patients, register there symptoms to get insight into their severity, and eventually be linked to healthcare specialists who can help them.
From the medical world's side, Rutgers said, healthcare- and science representatives can monitor the patients who register to see how the characteristics of CALD develop in the coming years, and what problems the disease poses for patients. "This creates specialist care and research based on what patients provide." Rutgers also hopes that this will help prevent a "proliferation" in corona research. "It is necessary to work together, share knowledge and spend research money efficiently. And patients must be central to this."