10 Daily Tips for Living With Primary Immunodeficiency

Primary immunodeficiency (PI) is a general name for a group of over 500 medical conditions. These are rare, long-term conditions where part of the body’s immune system either doesn’t work at all or doesn’t function properly. Most of these conditions involve genetic changes.

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Primary immunodeficiency can make it challenging for you or your child to avoid infections, so individuals with the condition may need to take additional precautions. Many people with PI continue to lead meaningful and active lives despite the diagnosis. Here’s how to maintain your quality of life and well-being while living with PI.

1. Wash Your Hands Regularly

Hand and body hygiene is crucial, especially for those living with PI. Washing your hands helps keep bacteria, viruses, and other microorganisms away from your body. You should also bathe regularly to lower your risk of infection.

Use soap and scrub your hands for at least 20 seconds. Wash your hands before and after eating and after contact with others. Keep hand sanitizer handy for times when you can’t get to a sink to wash. You’ll also want to maintain good dental hygiene and see a dentist regularly to keep your mouth clean and free from infection.

2. Avoid People Who Are Sick

The more you’re exposed to illness, the more likely you are to get sick yourself. Avoid seeing someone who is sick until they have fully recovered. If you know there will be a lot of people, consider avoiding crowded places, which may mean missing out on events that are important to you or your child or avoiding certain experiences altogether.

It helps to surround yourself with people who love you and understand primary immunodeficiency. That way, they’ll be sure to tell you when they’re ill and understand when you can’t do certain activities with them.

3. Disinfect at Home

Keeping your home clean and disinfected is another good way to minimize your or your child’s exposure to things that could cause illness. Children’s toys may need special attention, as these tend to be touched often and may harbor more bacteria and viruses.

Keeping a home entirely disinfected all the time probably isn’t realistic, so focus on cleaning areas that get touched the most, like doorknobs and light switches, or places where a lot of people pass through. This will help you to get the most benefit out of your effort.

4. Wear a Mask When Out of the House

If you have to be in a situation where you feel you’re likely to be exposed to someone who is sick, consider wearing a mask while you’re out. A mask may keep you from getting sick. If you do get sick, wearing a mask might mean you don’t get as sick. Masks can lower your exposure so your body doesn’t have to fight as hard to get well again.

Some people feel uncomfortable in masks. There are many different types available, so take the time to find one that works for you.

5. Get the Whole Family Vaccinated

Your immunologist will tell you which vaccines are safe for you when you’re living with PI. Depending on the type of PI you’re living with, you may need to skip vaccines that contain a live virus. Other times, you may need to recognize that your body won’t respond to some vaccines with a strong immune system response. You should still get all of the vaccines that your doctor recommends, because they’ll provide some protection against illness and infection.

You should also make sure that all of the people around you or your child get their vaccines, like friends or family members. This offers protection, too, because you’re less likely to be exposed when the people around you have this immunity. It’s key that caregivers for a child with PI get all of their vaccines too.

6. Eat Healthy Food

Eating well can help keep infections away and make it easier to fight them if you do get sick. Most people can eat a regular healthy diet full of vegetables, fruit, protein, dairy, and grains.

There are a lot of supplements available that you may want to take. While some of these may help your immune system, remember that they aren’t regulated by the government the same way that medications are. You and your immunologist can decide if supplements are right for you.

7. Avoid Smoke Exposure

Smoking and exposure to smoke increase the risk of chest infections. Doctors advise people with PI not to smoke and to avoid places where other people smoke. If possible, anyone close to you who smokes should do their best to quit, because getting exposed to their smoke can hurt you, too.

Quitting smoking can be hard. If you’re struggling to quit for yourself or your child, or someone else close to you wants to quit but can’t, talk to a healthcare provider. They can provide referrals to support groups, medical advice, and possibly prescriptions that will make quitting easier.

8. Get Enough Sleep

Sticking to a regular sleep schedule can keep your immune system working as well as possible. To do this, practice good sleep hygiene. This includes taking steps like:

• Avoiding heavy meals and alcohol before bed
• Limiting naps (unless your child is under 3)
• Going to bed and getting up at the same times every day
• Limiting how much caffeine you drink each day

People of different ages need different amounts of sleep. You should ask your or your child’s healthcare provider how much sleep is enough if you’re not sure. If you or your child struggles with sleep, your doctor can also help you figure out how to improve your rest.

9. Keep Stress Under Control

When you’re less stressed, your immune system will function better. Living with primary immunodeficiency can be inherently stressful, so it’s important to learn what works to lower your stress levels. You can try:

• Engaging in regular exercise or physical activity
• Spending time on your hobbies
• Learning to meditate
• Getting a massage
• Participating in biofeedback

If you haven’t managed your stress levels before, it might take time to find what works for you, so try to be patient with yourself.

10. Follow Up With Your Doctor Regularly

Staying on top of your PI care can help you live better. Once you find a specialist who treats PI, make sure you check in with them regularly. They may request that you monitor your symptoms, stick to a treatment plan, and track any medication side effects. You should do these things so you can feel as good as possible. You’ll also want to continue seeing your primary care doctor to stay on top of your overall health.

Your immunologist can also refer you to other people who can offer you support while living with PI. For instance, if you need help sleeping better, you might want mental health support, or if you need a specialist to treat a certain type of infection, they can refer you to the specialists you need on your team.

If you can’t work, your healthcare professional can also help you apply for disability benefits for primary immunodeficiency. They can also work with you to get all the necessary documentation for your application.

Your PI doctor will have access to the latest treatment options, including gene therapy (also called gene replacement therapy) and more, that you need to stay healthy and feel your best. They can arrange genetic testing to specify your PI type and order blood tests for monitoring.

Talk With People Who Understand

On myPIteam, people share their experiences with primary immunodeficiency disorders, get advice, and find support from others who understand.

Have you learned how to thrive after being diagnosed with primary immunodeficiency? Which tips are most important to you? Share your experience in the comments below.