What is it like to live with Primary Immunodeficiency?
When a defect in the immune system is inherited (carried through the genes), it is called primary, or inherited, immune deficiency. There are over 100 forms of Primary Immunodeficiency, ranging widely in severity. Together, they affect more people than leukemia and lymphoma combined. Primary Immunodeficiency often presents itself in the form of “ordinary” infections. Physicians sometimes treat the infections while missing the underlying cause, allowing the illnesses to recur, and leaving the patient vulnerable to vital organ damage, physical disability, and even death. Families struggling with immunodeficiency often do not know where to turn for help. Social, emotional, and financial burdens can often be overwhelming. The problems presented in inherited immunodeficiency disease have challenged researchers and immunologists to reach improved diagnoses, treatments, and new therapies.
There has never been more hope for people who are immunodeficient. All the same, families struggling with any Primary Immunodeficiency disease face a number of difficulties; for instance, the patient may have long periods of normal health, then suddenly be struck by high fevers, pneumonia, or any of the other problems noted above. The illnesses themselves are frightening, the lack of a definite diagnosis and treatment is frustrating, and “waiting for the next attack” can turn even healthy periods into times of great anxiety. Lack of public awareness for PI diseases can make the family feel isolated in its attempts to cope. Until recently, public sources of information have been scarce, even for doctors. Also, many patients and parents find they cannot get teachers, principals, employers, etc. to understand the nature of the medical problem at hand. Treatment can be very costly, especially if IVIG treatment is involved. Lack of adequate insurance can add to this problem.
There has never been more hope for people who are immune deficient. All the same, families struggling with any Primary Immunodeficiency Disease face a number of difficulties; for instance, the patient may have long periods of normal health, and then suddenly be struck by high fevers, pneumonia, or any of the other problems already noted. The illnesses themselves are frightening; the lack of a definite diagnosis and treatment is frustrating; and “waiting for the next attack” can turn even healthy periods into times of great anxiety. Lack of public awareness about PID can make the family feel isolated in its attempts to cope. Until recently, public sources of information have been scarce, even for doctors. Many patients and parents find they cannot get teachers, school principals or employers to understand the nature of the medical problem at hand. The problems presented by Primary Immunodeficiency Disease have challenged researchers and immunologists to improve diagnosis and treatments,
