The more you understand about primary immunodeficiency (PI), the better you can manage it. Learn about PI 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.
People with primary immunodeficiency (PI) don’t have to stay home—it may take a bit of extra planning, but you can get out and see the world, just like anyone else. However, taking your PI into consideration while planning your trip is crucial to safe, healthy, and enjoyable travel.
Some places and activities are riskier for a person with PI. For example, some immunologists tell people with chronic granulomatous disease (CGD) not to swim in the ocean or fresh water. Likewise, people who do not respond to vaccines shouldn’t visit places where they are likely to be around hard-to-treat germs.
If you do not respond to vaccines and are on immunoglobulin (Ig) replacement therapy, your Ig product contains antibodies for, and will protect you against, germs that are covered by routine vaccinations or that circulate widely in the U.S. For example, your Ig protects you against measles and chickenpox. Your Ig product will not protect you from germs that circulate widely in other countries but not in the U.S. and that aren’t covered by routine vaccinations, such as yellow fever or typhoid.
The first step to safe travel is to research health hazards in the place(s) you are going:
Before you book your travel, talk to your immunology team to make sure it is safe for you to travel to each place you plan to go. Your healthcare provider may refer you to a travel clinic with staff familiar with immunodeficiencies who can tell you about precautions to take in the specific place(s) you are visiting.
Look up the countries you plan to visit on both the U.S. Department of State and the CDC websites to answer the following questions:
Register with the State Department’s Smart Traveler Enrollment Program (STEP) as well. The program connects you with the local U.S. embassy or consulate in case you have an emergency at your destination and keeps you informed about local safety conditions.
People on multiple times-per-week medications, like interferon gamma, need to take their medications with them when they travel. However, if you are on Ig therapy, you may be able to travel without your Ig.
If you are taking medication or medical equipment with you, have a plan to transport and store it:
Think about good hygiene and what you eat and drink to avoid getting ill while you are away from home, especially if you’re traveling abroad.
Use this checklist to stay safe and healthy no matter where your travels take you!
Download checklistDepending on where you are going, your insurance coverage may change, so plan ahead and know your options during your travels.
Always plan for an emergency, no matter how far you’re traveling.
You can order or download this card, fill it out, and keep it in your wallet so that it's easy for emergency care providers to find important information about your condition.
Get emergency cardFinding the right job can help people living with PI be successful and earn health benefits.
We're here to help you better understand your insurance options, navigate the claims process, and advocate for the coverage you need.
This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
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