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.
Summer means travel for many people. Being diagnosed with chronic granulomatous disorder (CGD) doesn’t mean you have to stay home. It is best to consult with your physician if you are traveling, especially if you are traveling abroad, but with a bit of planning you will be on your way.
Medication and supplies should be packed where you can easily access them during all times when you are traveling, usually in your carry-on when traveling by air. Ask your immunologist if you should bring antibiotics or other medications in case you become ill. They will be allowed through a Transportation Security Administration (TSA) checkpoint once they have been screened. Keep your medications in their original containers. Your healthcare provider should write a letter of necessity for medications such as infusion supplies you bring on a plane. The TSA offers a notification card that can be used by travelers with medical conditions. Please note: the TSA Notification Card does not replace a letter of necessity written by your physician. Click here for a sample letter of medical necessity. You can learn more about travel from the TSA website:
Ask your immunologist for the name and contact information of a medical facility or immunologist in the area to which you are traveling, or call the Immune Deficiency Foundation at 800-296-4433 and we can help.
No one wants to become ill when they are away from home. Consider the following additional precautions to keep you well.
Ask your immunologist if there are other precautions you should take regarding food, beverages or other issues that are important to your care while traveling.
Always carry a copy of your insurance card. If you are traveling out of your state or to another country, contact your insurance company regarding coverage. Determine whether you should receive additional coverage. The International Medical Association for Medical Assistance to Travelers provides impartial information to travelers on vaccinations, health risks and food and water safety advice for all countries: http://www.iamat.org/
Immunizations. When traveling outside the U.S., consult with your physician regarding whether you should receive additional immunizations. General information for CGD travelers is available at: https://travel.state.gov/content/travel/en/international-travel/before-you-go/your-health-abroad.html
For more information about travel while on treatment from therapy manufacturers and specialty pharmacies, see the following links:
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