The immune system is composed of white blood cells. These cells are made in the bone marrow and travel through the bloodstream and lymph nodes. They protect and defend against attacks by “foreign” invaders such as germs, bacteria and fungi.
In the most common PIDDs, different forms of these cells are missing. This creates a pattern of repeated infections, severe infections and/or infections that are unusually hard to cure. These infections may attack the skin, respiratory system, the ears, the brain or spinal cord, or in the urinary or gastrointestinal tracts.
In some instances, PI targets specific and/or multiple organs, glands, cells and tissues. For example, heart defects are present in some PIDDs. Other PIDDs alter facial features, some stunt normal growth and still others are connected to autoimmune disorders such as rheumatoid arthritis. *American Academy of Allergy, Asthma, and Immunology
People born with Primary Immunodeficiency (PI) have part of their immune system missing or not functioning properly.
PI is incurable, life debilitating and chronic. It can make a person feel like a victim without hope. It is commonly referred to as an invisible disease because it lacks a unique or specific set of symptoms.
The simplest form of PI involves one, some or all of the antibodies normally made by the immune system. These are IgG, IgM, IgE and IgA. The body doesn’t produce enough of one or more of the antibodies needed to fight infection.
PI is not secondary immunodeficiency, which is an acquired illness or an autoimmune disease that attacks the body. However, it is common for those with PI to acquire these secondary diseases as a result of a dysfunctional immune system. There are approximately 185 unique diseases classified as Primary Immunodeficiency that effect over 250,000 people in the United States. LEARN MORE
Standard treatment for PI is an intravenous (IvIg) or subcutaneous (SubQIg) IgG replacement therapy, which provides IgG antibodies for those with missing or low antibodies. However, it is not currently possible to replace IgM, IgE or IgA. The goal is to boost the immune system in an effort to decrease the risk of infection. It is also normal to find patients on “prophylactic” antibiotics that they take daily, weekly and/or seasonally. Fortunately, with proper medical care, many patients live full and independent lives. LEARN MORE
For those living with PI, the risk of infection (getting sick) is greater and infections may not go away or can come back often, even with antibiotics. Additionally, there are common prolonged illnesses due to low levels of selective antibodies: skin infections, sinuses, throat, ears, lungs, brain or spinal cord, urinary or intestinal tracts, increased vulnerability to infection, repeated infections, infections that won’t clear up, unusually severe infections, chronic fatigue, fibromyalgia, and arthritis. If they are not managed well they will lead to other sever illnesses.
Because PI is incurable, life debilitating and chronic, it can make a person feel like a victim without hope. People with PI live their entire lives more susceptible to infections, enduring recurrent health problems and often developing serious and debilitating illnesses. With limited treatment and health management options available, they need hope. TRIFORBETTER aims to inspire, equip and encourage those with PI to actively pursue a BETTER quality of life through positive lifestyle choices. It’s about helping people get more out of their life. Sometimes BETTER is all we need to do more.