The Hyper IgM Foundation Blog 

The Hyper IgM Foundation has reached out to our world-renowned Scientific Advisory Committee to get their thoughts and experience with COVID-19 and PID and HIGM patients. Here is a summary of what they report:

Gladly, none of them have had or heard of any cases of yet of COVID-19 in HIGM patients. Of course, this is not surprising as Hyper IgM is a very rare disease and our numbers are small. Our families are also well trained in social distancing and ways to keep safe as we deal with these risks every day, and not only during times of pandemic. The general idea is that the data on Primary Immune Deficiency (PID) patients and COVID-19 has been very limited. This is on track to what has been put out there by the Immune Deficiency Foundation and IPOPI/CIS/ESID. In general, the idea is that most CD40L and other Hyper IgM patients that are generally on the young side would not have as severe cases as they may be similar to most children. Of course, if a HIGM patient did contact COVID-19, and was able to recover, they would not form immunity for this virus as HIGM patients or immunity to any viruses and rely on passive immunity from Immungloblin replacement therapies (IVIG/SCIG). 

There was a worry of course about anyone that has had past lung infections and may have some damage that can increase the risk of complications. For the older HIGM patients, the issues might be more severe and the risk of past organ damage can increase those risks. There are some suggestions in published data that immunosuppressed patients might be better off with mild cases, however, in one of our advises reports that they had two kids with cancer who were immunosuppressed and still needed hospitalization.

In Brazil, Dr. Condino-Neto has written a paper about patients with CVID and CVOID-19, he has had no deaths but some complications. We will share this paper once it is published and available for others to read. 

Lastly, In NYC, one of our advisers has seen several deaths in adult patients with PID (that had already complicated cases) as well as a few that have recovered. I guess this is not surprising that they had the most cases from our advisors as we are in NYC and in general we have many more cases and deaths.

I think overall this is similar to what we have seen and have heard before and the key is to continue to keep safe, social distance and hope that in a year or so the IVIG/SCIG products will start having the antibodies for COVID-19 and it will help protect our population.

Learn more about ways to keep safe while living with Hyper IgM Syndrome here.