Living with immunodeficiency

Living with an immunodeficiency means having a weakened or altered immune system that's less able to fight off infections effectively, whether due to an inherited primary immunodeficiency or an acquired condition. This typically requires ongoing management to reduce infection risk and treat infections promptly when they occur.

Immunodeficiency can be inherited (primary immunodeficiency, caused by specific genetic mutations affecting immune function) or acquired (secondary immunodeficiency, caused by conditions such as certain medications, cancer treatments, HIV infection, or other chronic illnesses). Identifying the specific type and cause guides appropriate management.

Common challenges include increased frequency and severity of infections, needing to take extra precautions around illness exposure, and sometimes needing regular treatments such as immunoglobulin replacement. Many people successfully manage these challenges with the right specialist support and practical adjustments.

It can be, since even relatively minor infections can become more serious in someone with a weakened immune system, so prompt treatment of infections and preventive measures are important. With appropriate specialist management, most people with immunodeficiency live full and active lives.

Primary immunodeficiencies are genetic, caused by specific inherited mutations affecting immune function, while secondary immunodeficiencies are acquired due to external factors like medication or illness rather than being inherited. Genetic testing can identify the specific cause in suspected primary immunodeficiency.

Yes, many forms can be effectively managed, whether through immunoglobulin replacement therapy, prophylactic antibiotics, treating any underlying cause of secondary immunodeficiency, or, for certain severe primary immunodeficiencies, stem cell transplant. Treatment is tailored to the specific type and severity of immune dysfunction.

Management typically includes regular specialist follow-up, prompt treatment of any infections, vaccination guidance tailored to your specific immune status, and sometimes regular immunoglobulin infusions or prophylactic medications. Practical measures like good hand hygiene and avoiding known infection risks are also important.

Vaccination recommendations are individualised, since some vaccines, particularly live vaccines, may need to be avoided or given differently depending on the specific type and severity of immunodeficiency. Your immunology team will provide tailored advice on which vaccines are safe and beneficial for you.

Primary immunodeficiency is caused by an inherited genetic defect present from birth affecting immune system development or function, while secondary immunodeficiency develops later in life due to external factors such as medication, illness, or nutritional deficiency. This distinction is important for guiding appropriate investigation and management.

Frequent, unusual or severe infections should prompt immunology assessment to check for an underlying immunodeficiency. Private immunology consultations can typically be arranged within about two weeks, considerably faster than standard NHS waiting times.