The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Recently, the CDC updated its guidelines for fully vaccinated people. While the new guidelines outline some additional detail (for healthcare settings, public transportation, and a few others), there have been many questions at Ask IDF, on social media, and at our recent events about what the guidelines mean (and don’t specify) for the PI community. Below are a few answers. Know that IDF will continue to monitor the situation and provide updates as needed. Four of the most common questions are addressed below.
What do the CDC recommendations mean for those with PI?
Although the CDC has advised that fully vaccinated people may be able to resume most activities, it is important to remember that the CDC is also recommending that individuals with a compromised immune system may not be fully protected even if they are fully vaccinated. Since each individual with PI is different, they should contact their healthcare provider since they may need to continue taking all precautions. Meanwhile, researchers are studying how people with PI respond to the vaccine, and we are looking forward to receiving those answers.
What do the CDC recommendations mean to those who have a loved one with PI?
While the CDC has advised that fully vaccinated people may be able to resume most activities, we have not yet reached herd immunity. Both vaccination rates and transmission rates vary widely by state and location, as do mask requirements. Taking precautions beyond the basic minimum limits in your area (for masking, distancing, or indoor vs. outdoor venue) will reduce the risk for those around you who may have a compromised immune system or are not yet vaccinated.
How is IDF advocating for PI patients with the CDC regarding opening and mask regulations?
IDF is a founding member of the Immunocompromised Collaborative, the united voice of communities whose health status makes them most vulnerable to threats from infectious disease. The Collaborative is working to ensure that the CDC is hearing patient perspectives and providing more specific guidance - for those with compromised immune systems, generally and for those with PI, specifically. Stay tuned for additional details on actions and results related to the work of the Collaborative.
Do I need to be tested for COVID-19?
If you are exposed to COVID-19 or develop symptoms, get tested as soon as possible. If you are diagnosed and are within the first 10-days post-exposure, you may be a candidate for the monoclonal antibody treatment.
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