Woman in workout clothes drinks from a water bottle.

Nurturing your health

Key points:

Good hygiene, healthy eating, exercise, and getting enough sleep can make life better for people with primary immunodeficiency (PI).
Talk to your healthcare provider before taking any vitamins, minerals, or other supplements since they can interact with medications and have unexpected health effects.
It’s important to find a primary care provider who knows about your condition and symptoms and can help coordinate your care.
Keep organized healthcare records and speak up for yourself during medical visits to get the care you need.

Finding out you have a primary immunodeficiency (PI) means different things to different people. For many, it's both an ending and a beginning. It's the end of a search for answers. But once you have a diagnosis, it's the start of living your life while dealing with a chronic condition. Getting a PI diagnosis changes your life, but it can be a positive step forward. The diagnosis and treatment are the first steps to feeling better and improving your overall health.

Most people with PI don't need to make big changes to their lives. It's important to remember that many people can still live full and active lives. It may take some time to adjust and figure out what your new normal is while living with this condition. Taking care of your physical and mental health and talking openly with your healthcare providers is very important. This will help make sure that your diagnosis is only one part of your life and does not define you.

Hygiene

Keeping clean is important for everyone, especially people with PI and their families. Things like showering, washing your hands, and brushing your teeth help get rid of germs, which keeps you healthier.

Good hygiene means taking regular showers or baths with soap. If PI causes skin problems, your healthcare provider might tell you to use special soap or take baths with a little bit of bleach in them to help kill germs [1].

For proper handwashing, follow these steps:

First, wet your hands with water and put soap on them.
Then, rub the soap all over your hands, including the front, back, and between your fingers, for at least 20 seconds. Humming the “A,B,Cs” song or another song that is at least 20 seconds long can help you make sure soap remains on your hands long enough.
Finally, rinse the soap off with clean water and dry your hands completely.

Using soap and water is the most effective way to clean your hands. However, if they aren’t available, you can use hand sanitizer or hand wipes that have alcohol in them. They should have at least 60% ethyl alcohol or 70% isopropyl alcohol. Some hand sanitizers and wipes have a different ingredient called benzalkonium chloride, but it doesn’t work as well against germs. When you use hand sanitizer, read the instructions to know how much to use, and rub it all over your hands until they are dry. Don’t wipe the sanitizer off before it dries. If your hands are greasy or very dirty, hand sanitizer or wipes won’t work as well as washing with soap and water [2].

You can also avoid getting sick by not touching your face, especially after you touch surfaces like a doorknob or table. Germs can live on these surfaces for a long time, and your hands can easily spread germs to your nose, mouth, or eyes.

Brushing and taking care of your teeth are also important for staying healthy. People with some types of PI are more likely to have problems with their gums and get infections from cavities. It’s very important to see a dentist regularly (at least every six months) and brush and floss your teeth at least twice a day.

Try to stay away from people who seem sick, like those who are coughing or have a runny nose, a fever, or diarrhea. When it’s cold and flu season, it’s a good idea to avoid crowded indoor places like malls or movie theaters. Also, watch out for outbreaks of diseases like measles or chickenpox in your town or at school, and don’t go to places where people are gathering if there’s an outbreak.

Some people wear a mask in public for extra protection. A well-fitting N95 or KN95 mask that fits over your nose and mouth can keep you from breathing in germs that cause colds, the flu, or COVID-19 [3]. But masks can get wet from your breath or nose, and they don’t work well when they’re wet. So, it’s important to change your mask when it gets wet or dirty.

Daycare

Young children with PI can often attend daycare, but parents and guardians should be aware that their child will be exposed to germs in these settings. Exposure tends to be greater in large, multi-classroom facilities. Caregivers may want to consider smaller settings or in-home daycare. Always speak with your pediatrician or immunologist before enrolling your child and use our "School Guide for Students with Primary Immunodeficiency" to help daycare staff understand your child's condition and needs.

Get more tips for caring for children

Nutrition

Eating a healthy and balanced diet gives you the nutrients you need to grow and develop properly. A balanced diet also helps your body repair itself and stay in good shape. Eating well is important for everyone, but it's even more important if you have a PI. If you don't get enough of the right nutrients, you can get sick more easily. This includes infections, which people with PI are already more likely to get.

The “Healthy Eating Plate,” released in 2011 by the Harvard T.H. Chan School of Public Health and Harvard Health Publications, suggests eating many different foods, including those with protein and fiber [4]. It also recommends staying at a healthy weight and limiting how much trans fat, added sugar, salt, and alcohol you consume. Your healthcare provider can give you advice on how to eat a healthy diet.

Feeding interventions and special diets

Usually, people with PI don't need a special diet unless they have other health problems like diabetes, food allergies, or celiac disease. But if someone can't eat or drink, or if their body has trouble getting nutrients from food, there are ways to help them get enough calories and nutrients. These interventions are called hyperalimentation, and they include enteral and parenteral nutrition.

Enteral nutrition

Enteral nutrition involves feeding someone through a special tube that goes straight into their stomach or small intestines. Healthcare providers might suggest this if a person can't eat enough food to stay healthy or drink enough liquids to keep from getting dehydrated. This feeding method can help people who have trouble swallowing, like those with ataxia-telangiectasia. It can also be a short-term fix for people who have gastrointestinal tract inflammation (mucositis) during a hematopoietic stem cell transplant (HSCT).

There are two main methods for providing enteral nutrition: using a nasogastric (NG) tube or a gastrostomy tube (GT). An NG tube is a small, flexible plastic tube that goes up the nose, down the esophagus, and into the stomach. In babies, these tubes may be inserted through the mouth instead of the nose. A GT is a feeding tube that is placed directly into the stomach through the abdominal wall, either surgically or using an endoscope. A percutaneous endoscopic gastrostomy (PEG) tube is a specific kind of GT that is placed using an endoscope.

Both NG and GT tubes can also be placed further down the digestive system, into the upper part of the small intestine, the jejunum, bypassing the stomach. This is done if there's a medical reason, like reflux that can cause food or liquid to go into the lungs. These tubes are called GJ (gastrojejunum) tubes.

Healthcare providers use an NG tube if someone needs tube feeding for less than four to six weeks. If they need it for a longer time, providers will place a GT tube [5]. NG and GT tubes can be taken out whenever they are no longer needed.

The person getting tube feeding receives specific amounts and kinds of nutrients and liquids through these tubes, either all the time or at set times. There are many special formulas made for tube feedings that have different amounts of calories, nutrients, and other ingredients. Your healthcare provider will decide which formula is best for you based on your needs.

Parenteral nutrition

Parenteral nutrition (PN) is a way of feeding people by putting nutrients directly into their bloodstream. This is done through a thin tube called a catheter, which is placed into a vein or large blood vessel. Healthcare providers use PN when someone is very ill or malnourished, can't handle food passing through their stomach or intestines, or can't absorb nutrients properly.

PN solutions usually contain protein, carbohydrates, fats, electrolytes, vitamins, water, and important minerals. PN can be given through different types of intravenous catheters. However, total parenteral nutrition (TPN), which has higher amounts of nutrients and fats, can only be given through a central venous catheter or a chest port. Getting nutrition through PN or TPN is usually a short-term way to meet a person’s immediate nutritional needs.

Nutritional supplements

Nutritional supplements include vitamins and minerals, plant extracts, probiotics, and fish oils. Many of these products are advertised a lot and claim to improve health by making the immune system stronger. It's important to know that supplements are not regulated by the U.S. Food and Drug Administration (FDA) in the same way that prescription and over-the-counter medicines are [6]. Most supplements have not been tested in large studies, so there isn’t a lot of information on whether they work or all the ways they can affect the body.

Be careful when using supplements, and always talk to your healthcare provider about any supplement you are thinking about taking before you start taking it. Keep in mind that:

Supplements can affect how other medications work.
Supplements may cause unexpected side effects in people with certain health problems.
Most supplements have not been tested in people who are pregnant or breastfeeding, or in people with PI.
It is possible to take too much of certain vitamins and minerals, such as vitamin A, iron, and magnesium. Taking more than the recommended daily amount can cause dangerous health problems like liver failure.
The amount of active ingredients in herbal supplements and extracts can vary a lot, so it is hard to know exactly how much you are taking.

Companies often promote daily multivitamins as a way to ensure you are getting all the necessary minerals and vitamins to stay healthy. However, most people get enough vitamins and minerals from the food they eat, so they do not need to take a daily multivitamin. Aside from the cost, taking a multivitamin is usually not harmful. However, there is no proof that taking a daily multivitamin improves the immune system in people with PI.

Vitamins A (retinol), B6 (pyridoxine/pyridoxal phosphate), C (ascorbic acid), and E are naturally found in many foods and help keep your immune system healthy. If you don't have enough of these vitamins, your healthcare provider might suggest taking a vitamin supplement. But research hasn't shown any advantages to taking extra amounts of these vitamins if you have PI.

Many herbal supplements claim to boost the immune system. Some examples are astragalus, ashwagandha, cat’s claw, echinacea, goldenseal, and European mistletoe. Currently, there's no proof that these supplements help people with PI. It's also important to know that, unlike vitamins and minerals, there aren't any guidelines on the maximum safe amount for someone to take. This is important because some supplements, like astragalus [7], could make autoimmune condition symptoms worse [8]. They might also interfere with immunosuppressants and other medicines [9].

Fish oil has fatty acids that can lower the amount of a certain type of fat called triglycerides in your blood. Fish oil is usually tolerated well by most people. Common side effects are burping and bad breath. However, similar to astragalus, some information suggests that high amounts of fish oil might weaken the immune system [10].

Probiotics have one or more types of bacteria or yeast that experts consider "good" members of the community of germs that live in and on each person (microbiome). Fermented foods and drinks like yogurt, kimchi, and kombucha naturally have probiotics.

Many probiotic products sold in stores are meant to help the gut microbiome and contain germs like Lactobacillus acidophilus, Bifidobacterium longum, and Saccharomyces cerevisiae subsp. boulardii. They can help you prevent or recover from digestive system infections, or prevent or recover from diarrhea caused by antibiotics [11]. There is increasing proof that probiotics can be helpful for these uses, depending on the specific combination and amount of germs they have. However, probiotics have also been connected to serious infections, especially in premature babies and in people with weakened immune systems or inflammatory bowel disease (IBD) [12].

If you are thinking about taking a supplement, it is important to remember that most have not been studied in people with PI. It is also important to remember that these products are not a replacement for a healthy, balanced diet or for proven medical treatments. Always talk to your healthcare provider before taking any nutritional supplements or vitamins.

Addressing stress and mental health

Having a chronic health problem like PI can affect your mental health. It's important to know how to take care of your mental and emotional health and when to get help from a professional.

Strengthen your mental health

Exercise

Everyone, even those with PI, should try to be physically active on a regular basis. Physical activity is good for both your body and your mind. Exercise is a great way to relieve stress and anxiety. Organized sports can be especially helpful for kids who are struggling with their PI. Being part of a team can help a child with PI feel more like other kids.

Activities like swimming, biking, running, and walking help your lungs work better and make your muscles stronger. People who exercise regularly tend to get sick less often. They also have healthier hearts and less inflammation in their bodies.

However, some exercises might not be safe for people with certain types of PI. For example, people with low platelet counts should avoid sports where they might get hit. Some people with specific types of PI, like chronic granulomatous disease (CGD), should not swim in fresh water. Also, everyone with PI should be careful when swimming in lakes or streams because they are more likely to get infections from parasites like Giardia lamblia and Cryptosporidium spp. These parasites can cause severe diarrhea. Cryptosporidium can also cause severe liver problems in people with PI [13].

If you have any concerns, your healthcare provider can recommend safe exercises for you.

Sleep

Getting enough sleep is important for everyone, especially for people with chronic conditions like PI. Research shows that it's best to sleep for the same number of hours every night and to go to bed and wake up at the same times. While sleeping later on a Saturday morning might seem enjoyable, it may not be good for your health. Changing your sleep schedule often can weaken your immune system [14].

Here are some helpful tips for getting good sleep:

Go to sleep and wake up at about the same time every day.
Get recommended amounts of sleep each day [15]:
- Babies and newborns: 14-17 hours (including naps).
- Toddlers and preschoolers: 10-14 hours (including naps).
- School-age children: 9-12 hours.
- Teenagers: 8-10 hours.
- Adults: 7-9 hours.
Don't drink caffeine, like coffee, tea, or cola, in the evening.
Avoid eating big meals in the evening or snacking right before bed.
Make sure you won't be bothered during the night (don't fall asleep with the TV on, put your phone on ‘do not disturb’).
Try not to use screens like phones or tablets before bed.
Avoid taking long naps during the day, as they can mess up your sleep schedule.

Misconceptions about PI

Primary immunodeficiencies are not just pediatric disorders; ~75% of patients are diagnosed as adults.

Not all primary immunodeficiencies are life-threatening, many are mild or moderate and patients don't 'look' sick.

Primary care

It's important for everyone to visit a primary care provider for regular checkups, but it's even more important for people with PI. A primary care provider is usually a medical doctor (MD or DO), physician associate (PA), or nurse practitioner (NP) who focuses on internal medicine (adults only), pediatrics (kids only), or family medicine (both).

Many types of PI are connected to other health problems. For example, people with common variable immune deficiency (CVID) are more likely to have autoimmune conditions. A primary care provider who knows you well and sees you regularly may be the first to notice signs of these problems. In addition, a good primary care provider can help communicate and coordinate care with your other healthcare providers.

One of the things that primary care providers do is give routine vaccines. Most children and adults with PI can get shots that are not live vaccines, and many can also safely get live vaccines as well. If you have concerns about getting vaccinated, you can talk with your immunologist.

It's also important for household members and others close to those with PI to get vaccinated. Being surrounded by people who are up-to-date on their shots helps protect the person with PI from being exposed to germs.

Bone health

Bone health can be a concern for both men and women with PI. Healthcare providers often use corticosteroids, like prednisone, as an initial treatment for many PI-related autoimmune and inflammatory conditions. However, corticosteroids can increase bone loss, potentially leading to low bone density (osteopenia) and, eventually, weak, fragile bones that break easily (osteoporosis). Poor nutrition and not getting enough physical activity due to illness or joint inflammation can worsen the effects of corticosteroids on bone health. In addition, many individuals with PI experience ongoing inflammation, which can also negatively impact their bones.

For these reasons, healthcare providers often screen for osteopenia and osteoporosis earlier in people with PI compared to those without PI. To prevent bone loss, people with PI can engage in weight-bearing exercises such as walking or running. Your healthcare provider may also suggest taking calcium or vitamin D supplements and may work with your healthcare team to adjust medications to minimize the risk of bone loss.

Cancer risk and screening

People with PI are more likely to get certain cancers because a healthy immune system helps get rid of cancer cells. Generally, people with PI have a higher chance of getting lymphoma, a type of blood cancer, and stomach cancer, also called gastric cancer [19,20]. Some specific types of PI can also increase the risk for other kinds of cancer.

Currently, there aren't any screening tests for lymphoma. It's important for people with PI to tell their primary care providers about any new symptoms that could be caused by lymphoma, such as swollen lymph nodes, fever, chills, a swollen stomach, tiredness, and weight loss.

Healthcare providers should check people with PI for other cancers by following the guidelines for screening tests based on age and risk factors. These guidelines come from groups like the U.S. Preventive Services Task Force, the Centers for Disease Control and Prevention (CDC), and the American Cancer Society.

The American Gastroenterological Association (AGA) suggests that healthcare providers screen people at risk for stomach cancer starting at age 45 [21]. They recommend using a test called upper endoscopy that uses a flexible tube with a camera to look at the upper part of the digestive system.

Dealing with infections

Even after being diagnosed and starting treatment, people with PI will still get sick sometimes. The purpose of treatment is to make sure these infections are not as bad and do not happen as often, but they probably will not stop completely. If you think you are sick, it is important to see your primary care provider as soon as you can so they can figure out what is wrong and treat it. Seeing a provider quickly will keep infections from getting worse and will help prevent lasting damage.

If you get sick:

Always see a healthcare provider. Do not ignore signs like a cough or fever and think they will go away on their own.
Never treat yourself. Do not take old medicines or medicines that were given to someone else.
Follow the healthcare provider’s instructions. If you are told to take antibiotics for two weeks, take them all. Do not stop early because you feel better. If you are told to stay home from work or school, then stay home.

Start with your primary care provider, but also make sure that the specialist treating your PI, such as your clinical immunologist or rheumatologist, knows about any infections as well. Your specialist needs to know because this information can change how they take care of or treat your PI. For example, people with antibody deficiencies may need a higher dose of immunoglobulin (Ig) replacement therapy if they keep getting sick [22].

Learn more about PI and immunizations

In 2014, the Medical Advisory Committee published comprehensive recommendations on vaccines for those with PI and their family members in The Journal of Allergy and Clinical Immunology.

Read journal article

Advocating for your health

People with chronic health conditions like PI may see many different healthcare providers in many different contexts. Understanding your condition, keeping organized records, and speaking up about your needs can help you get the best possible care.

The Bill of Rights for individuals with primary immunodeficiencies, developed by our Nurse Advisory Committee, lays out what you can expect from your healthcare providers and how to participate in your care.

Creating a health binder and health summary

Keep important information organized on paper or digitally so any healthcare provider—especially in emergencies—can quickly help you. Think about keeping paper copies of important records in case you can’t access digital files.

Include the following information:

A short summary of how your PI was diagnosed, any genetic factors, and laboratory tests that confirm your diagnosis.
A list of medicines with names, doses, how they are given, and when they are given.
Details about immunoglobulin (Ig) replacement therapy, such as the brand, batch numbers, amount given, infusion logs, and any side effects, if applicable.
A timeline of important events like hospital stays, surgeries, changes or lapses in treatment, major health events, and other diagnoses.
A list of all of your regular healthcare providers and their contact information, including those specializing in immunology, hematology/oncology, rheumatology, infectious diseases, and primary care.
Contact information for your pharmacy, including specialty pharmacy, if applicable.
Recent lab results, imaging scans, clinic notes, and summaries from hospital discharges.
Your vaccination records.
A list of food, medication, and environmental allergies, if applicable.
Insurance cards and approvals for treatments.

For emergency or urgent care visits, a bulleted health summary is helpful. It should list major diagnoses, treatments, current medications, medication allergies, hospitalizations, and surgeries. Include key healthcare provider names and phone numbers. If possible, limit the summary to one page, front and back. Additional helpful documents include:

A signed letter from the specialist that treats your PI explaining your condition and any specific considerations in an emergency (for example, that you may not have an elevated white blood cell count or a fever with infections).
A copy of the PI emergency card and/or transplant emergency card.

Self-advocacy during medical visits

Here are some tips on how to get the most out of your medical visits:

Write down three to five questions to ask. For example, you could ask, "What are my main goals before the next visit?" or "How will I know if this is helping?" Resources from the Agency for Healthcare Research and Quality (AHRQ) can give you ideas [23].
Take notes or record the visits if you have permission. Bring a trusted friend or adult family member to help you listen.
Ask for written directions for medication, keep track of how it's working, and ask when to call the provider if you have questions or concerns.

During medical appointments, hospital stays, and home health visits, you can do the following to make sure you are getting appropriate medical care. For any concerns about home health visits, call the agency.

Ask questions: Ask the healthcare provider to explain what they're doing and the treatment plan, if applicable. This helps make sure everyone is on the same page and can prevent mistakes, especially in the hospital or in emergency situations [24].
Check for infection prevention: Make sure healthcare providers are following standard infection control measures, like washing their hands and wearing personal protective equipment (PPE) like masks. Depending on your symptoms or diagnosis, providers may need to take extra precautions to prevent the spread of germs. For example, you may need a private room in the hospital or a private waiting area in the emergency room.
Speak up: If a healthcare provider doesn't understand your PI, explain it to them or ask them to call your immunologist for more information. If you see staff not following infection control procedures, remind them to wash their hands and wear PPE [25]. If you don't understand a medical procedure, diagnosis, or treatment, ask the provider to explain it again until you do.
No unnecessary exposure to germs: If a home health provider or medical office staff are sick, ask to reschedule your appointment.
Safety: The healthcare provider should follow standard safety rules, such as handling equipment safely [25,26].
Share your choices: You can ask if there will be student observers or that non-medical staff wear masks.

Resources to help you advocate for yourself

Bill of Rights for individuals with primary immunodeficiencies

I Am Immunocompromised emergency card

I Am A Transplant Patient emergency card

Page references

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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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