« Staying Healthy

General Tips for
Life with Primary

Finding balance is very important. Managing your disease, symptoms, and necessary treatments are critical. But they can be accomplished while maintaining the activities and relationships that are part of a healthy, everyday, full life.

Make sure you understand your doctor�s instructions for managing your primary immunodeficiency disease.

Be your own advocate.

It’s your body. Your symptoms. That means that the absolute best person to take charge of your healthcare—is you. Make sure you understand your doctor’s instructions to help with your care.

Anything more than moderate drinking can be harmful to your health when living with primary immunodeficiency.

Say “No” to alcohol.

Because liver function is changed while consuming alcohol, you might be putting yourself at greater risk overall. Generally, anything more than moderate drinking can be harmful to your health.1

When living with primary immunodeficiency disease, smoking puts you at greater risk for more problems as you get older.

Don’t smoke.

Patients with immune problems already have a greater risk for lung damage over a period of time. When you have problems with infections in your nose, sinuses, or lungs, or frequent pneumonias, your lungs may have chronic or long-term changes from the bacteria or viruses causing the damage. Smoking puts you at greater risk for more problems as you get older.

Keeping a health diary can help you manage your primary immunodeficiency disorder.

Keep a health diary.

Effective documentation and communication with your healthcare team is an important part of managing your PI. One way to help your team see how things are going is to keep a health diary. Here, you can track your treatments, illnesses you've had, symptoms you may be experiencing, details about your treatment, and other health information. Share your diary with your healthcare team so they can determine how your PI management is going and if any adjustments need to be made.


Find emotional support and resources to help you at diagnosis and throughout your PI journey.

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