Coronavirus: Bleeding Disorder Patient Groups Respond

Communications about COVID-19 go out to those living with hemophilia, von Willebrand disease.

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COVID 19

With the coronavirus pandemic putting stress on the global healthcare system, patient advocacy groups for those living bleeding disorders such as hemophilia or von Willebrand disease are keeping a close eye on the unfolding crisis.

In an open letter earlier this month, Dr. Leo Valentino, President and CEO of the National Hemophilia Foundation (NHF) stated that people with inherited bleeding disorders are generally “neither immune compromised nor at greater risk for viral infections such as COVID-19.” However, those living with both hemophilia and inhibitors “have an altered immune system and greater care should be taken to avoid exposures to others who are sick, especially those with fever and/or a cough,” Valentino wrote.

“Those who take particular drugs (e.g., steroids such as prednisone) that depress the immune system are at heightened risk for infections including viral infections,” Valentino added. “These individuals should take heightened precautions to keep space between them and others, avoid crowds as much as possible, wash hands frequently – especially after going out and limiting contact with others who are sick to avoid exposure.”

The World Federation of Hemophilia has also posted a statement to its site. The Coalition for Hemophilia B plans to share information relevant to patients on its Facebook page.

Just as they have on many other aspects of daily life, restrictions on travel and public gatherings are having a significant impact on the bleeding disorder community. Many local groups around the world have canceled or postponed fundraising and other events surrounding next month’s World Hemophilia Day.

For those looking to decompress from the stress and anxiety surrounding COVID-19, Rick Starks with the Coalition for Hemophilia B volunteer is running a free 20-minute online sessions of Tai Chi and Qigong several times per week. Information on when and how to join can be found here.

If you still have more questions about COVID-19 and its effect on the bleeding disorder community, the NHF is teaming up with the Hemophilia Federation of America for a webinar on the topic on Friday, March 20 at 6 p.m. Eastern time. You can sign up here