HAE + COVID-19

A patient who has HAE, which causes dangerous swelling, shares his experience with a COVID-19 infection.

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Even after several months of worldwide focus, COVID-19 remains an unpredictable virus and that’s cause for a specific kind of concern if you have a rare disease.

Scientists are straining to understand the novel coronavirus and, so far, little is known about how COVID-19 might affect people who live with less common medical conditions.

With a note of caution, the U.S. Hereditary Angioedema Association recently shared a video interview with patient Scott McCoy, who got sick with COVID-19 and has since recovered. McCoy, an HAEA member, said he and his wife were ill for about two weeks with intestinal upset, chills, body aches and a rash. McCoy, 63, then lost his sense of smell and taste for 10 days. But the good news is that while he was ill, McCoy had no flare ups of HAE, a hereditary disease that causes dangerous swelling episodes.

“HAE didn’t rear its ugly head, McCoy said in an interview with HAEA President and CEO Anthony J. Castaldo. Six generations of McCoy’s family have had the rare disease and now that includes his daughter and a grandchild, he said.

McCoy noted that he continued infusing his regular treatment while he was sick – something that Castaldo emphasized. People who have HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH).

Castaldo also stressed, at the video’s opening and its closing, that people shouldn’t draw medical conclusions from the experience of just one patient.

“Science shows that there are a multiplicity of factors that may affect the medical impact of a COVID-19 coronavirus infection in a human being,” he said.

Castaldo urged patients to exercise an abundance of caution, follow guidance from their state and local health departments and to consult their doctor for specific advice, especially if they show any symptoms. More patient resources are available at https://www.haea.org/.

The U.S. Centers for Disease Control recently updated its guidance to say that patients who have certain conditions appear to be at increased risk. They include:

The CDC also noted that new information is becoming available daily and to expect updates to this list.