April is National Primary Immunodeficiency Awareness Month
Approximately 250,000 people are diagnosed with primary immunodeficiency diseases in the United States, but thousands more go undetected and untreated. These diseases are chronic illnesses caused by hereditary or genetic defects in the immune system in which part of the body's immune system is missing or does not function properly.
April is National Primary Immunodeficiency Awareness Month, a time when the Immune Deficiency Foundation (IDF) works to educate the public about the symptoms of these diseases and what resources are available for patients.
Founded in 1980, IDF is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
There are more than 185 different primary immunodeficiency diseases, and they affect people differently. These diseases are not contagious. For some, the body fails to produce any or enough antibodies to fight infection, while for others; the cellular defenses against infection fail to work properly. Throughout their lives, people with primary immunodeficiencies are more susceptible to infections, endure recurrent health problems and often develop serious and debilitating illnesses.
"Our National Awareness Month is an important opportunity for our organization to educate and inform the public about primary immunodeficiency diseases, which hopefully leads to early diagnosis and appropriate treatment for people who are suffering from persistent infections, but have not yet been diagnosed," said Marcia Boyle , IDF President & Founder, who founded the organization more than three decades ago after her then infant son, John, was diagnosed with the disease.
"April is a time when we mobilize our supporters and patients to raise awareness in their own communities through grassroots outreach and by contacting the local media," she added. "It is amazing to see how patients sharing their individual stories each April results in a significant number of new diagnoses of primary immunodeficiency diseases and leads to people getting the help they need."
The month culminates with IDF joining international patient organizations to mark World PI Week (April 22-29, 2013), a global campaign, which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiency diseases.
Is It Just An Infection?
One of the key message points IDF works to communicate during National Primary Immunodeficiency Awareness Month is the importance of evaluating infections to determine if it is something out of the ordinary, a potential sign of a primary immunodeficiency disease.
People should be suspicious of an infection if it is:
Severe – requires hospitalization or intravenous antibiotics
Persistent – won't completely clear up or clears slowly
Unusual – caused by an uncommon organism
Recurrent – keeps coming back
Runs in the Family – others in your family have a similar susceptibility to infection
If people have infections that match any of these descriptions, they are advised to consult their physician to check for the possibility of a primary immunodeficiency disease.
People with primary immunodeficiencies are more susceptible to infections and health problems that lead to serious and debilitating diseases. Patients can live long, healthy, normal lives, but early diagnosis and proper medical care are an essential first step.