Living with a primary immunodeficiency disease can be life changing. In this section, we look at ways that you can take care of your body (or your loved one’s) in order to reduce the chances of infection and increase general health.
A balanced and healthy diet, with the daily recommended amounts of fruits, vegetables, fibre, protein and calcium should be maintained
There is no scientific evidence that any product will boost the immune system or make it stronger. Extreme caution should be used when considering taking any of these products. Some of these supplements can be harmful or interact adversely with prescription medicines the individual is already taking. The healthcare provider’s opinion should always be sought before taking any of these products. Sometimes the provider will recommend vitamins, electrolyte supplementation or probiotics for certain patients but remember that supplements are no substitute for a healthy, balanced diet.
One of the most important things for primary immunodeficiency patients is good hygiene. A good hand washing routine should be established. Hands should be washed with soap and water for 30 seconds, the following times during the day: before and after meals, after using the toilet, after coughing, sneezing or blowing one’s nose, upon returning home, and any time that a risk of germs is present.
Purell or other gel-based hand sanitizers can be used in situations where soap and water is not readily available.
A common sense approach to infection prevention is generally the best policy to follow. Individuals with a primary immunodeficiency should avoid exposure to people who have signs of an obvious infection, like people who are coughing, have a fever or have vomiting and/or diarrhea. During periods of influenza outbreaks, it might be wise to avoid crowded areas such as shopping centers and movie theatres. Many PI patients people have questions about flying or other travel. When in doubt, ask the immunologist or primary healthcare provider for advice.
Getting an adequate amount of sleep is an essential requirement for good health. Most scientists recommend a consistent number of hours of sleep per night and consistent bed times and waking times, as well. While “sleeping in” on a Saturday may seem like a special treat, it may not be the best thing to do to insure good health. Erratic sleep patterns have been shown to have negative effects on the immune system
Since vaccines for chicken pox, measles, mumps, smallpox, rubella, rotavirus, BCG, yellow fever, oral polio and the influenza nasal spray are live attenuated vaccines, individuals with primary immunodeficiency diseases could potentially contract infections if they receive these immunizations. In practice, infants with Severe Combined Immune Deficiency (SCID) are at greatest risk and it is the general recommendation that others with defects in adaptive immunity also avoid receiving any live agent vaccines. Since some of these live vaccine viruses (oral polio, rotavirus) can be found in the some body fluids and stools for up to two weeks following vaccination, it may be necessary to limit contact between any recently immunized individual and infants with SCID until the period of viral shedding has passed. For children and adults with PI who are receiving immunoglobulin (Ig) replacement treatment, the infused antibodies should give them adequate protection from any secondary spread of vaccine virus.
We recommend that all members of a family, including the patient, should keep their immunizations up-to-date. This is particularly important for readily communicable diseases like influenza with many different strains circulating that change from year to year. This is because some patients with a PI may respond and benefit directly from the influenza vaccine. Even if they do not, there is little down side to receiving the killed vaccine. Family members who are able to respond to a vaccine will be protected. Even if the PI patient does not respond to the immunization, they will benefit from having everyone else in the home protected from infection and thus not susceptible to bringing the virus home with them. This is particularly important if there are other school-aged children in the home. We want to create a “protective cocoon” of immunized persons surrounding the PI patients so that they have less chance of being exposed to a potentially serious infection like influenza. CIPO is a proud member of the IFA World Coalition on Adult Vaccination.
Due to the nature of primary immunodeficiency diseases, patients are likely to experience illness more often. When ill:
The notion that people get sick more often when they are under increased stress is supported by scientific data. Chronic illness, itself, is known to be a major life stressor. Some studies suggest that stress negatively affects the functioning of the immune system. There are also scientific studies that suggest reducing stress can improve immune function. Many stress reducers are easy to incorporate into one’s daily life. These include massage therapy, biofeedback, meditation and hobbies. The importance of physical activity and adequate sleep in helping to reduce stress has already been discussed.
If you find that you are unable to deal with the stresses in your life, you should absolutely discuss these concerns with your primary care provider. They can assist you or refer you to someone who can help you to minimize and effectively deal with stress. You should never feel that there is nothing that can be done for the stress that you feel is overwhelming and keeps you from living and enjoying your life.
* Reproduced with thanks to our friends at the Immune Deficiency Foundation.