“Primary immunodeficiency diseases (PI) are a group of more than 300 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. While not contagious, these diseases are caused by hereditary or genetic defects, and, although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Some affect a single part of the immune system; others may affect one or more components of the system. And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body's normal immune system.
Because one of the most important functions of the normal immune system is to protect us against infection, patients with PI commonly have an increased susceptibility to infection. The infections may be in the skin, the sinuses, the throat, the ears, the lungs, the brain or spinal cord, or in the urinary or intestinal tracts, and the increased vulnerability to infection may include repeated infections, infections that won't clear up or unusually severe infections. People with PI live their entire lives more susceptible to infections--enduring recurrent health problems and often developing serious and debilitating illnesses. Fortunately, with proper medical care, many patients live full and independent lives.“ -primaryimmune.org
My father, David John Russo, was diagnosed with Agammaglobulinemia at a young age. Patients with this immunodeficiency disease lack the ability to produce antibodies and are prone to develop infections. These infections most commonly occur in the middle ear, sinuses, lungs as well as the bloodstream and internal organs. Gastrointestinal problems often arise as well particularly abdominal pain, diarrhea and poor growth. Patients with Agammaglobulinemia sometimes suffer from skin infections and are prone to common bacteria such as the pneumococcus, streptococcus, the staphylococcus and Hemophilus influenzae.
During his lifetime, David had complications with all of these issues and more. Treatment of Agammaglobulinemia for my father included intravenous infusions of gamma globulin every three weeks, which was necessary for survival. I recall my father being in the hospital several times throughout my life due to serious bacterial infections. David also had Celiacs disease, which limited his food options to a gluten-free diet.
In 2006, my father, David, was diagnosed with squamous cell cancer in his jaw. The doctors believed this to be a result of his immunodeficiency disease. David underwent an 8 hour surgery in which they removed bone from his leg to replace the cancerous piece of jawbone. This surgery resulted in my father not being able to speak or swallow properly and following many complications with chemo and radiation, my father, David, passed away 6 days after he turned 56 on December 29, 2006. I can remember that week very vividly as a sat by his side playing LOVE - the Beatles album, which I had bought him for Christmas. I even remember us watching National Treasure on the hospital TV a few days before he passed.
My father’s heart, soul and mind we’re too good for his physical body. His physical body couldn’t take any more infections or surgeries. God must have chose him for a reason to live with and persevere with this primary immune disorder. Despite his hardships and medical obstacles, my father worked and traveled to NYC all of his life, took care of his family, enjoyed many wonderful family vacations and special occasions. David was also an extremely talented musician, extremely technologically savvy and had a passion for the little things in life. He was such a bright, fun-loving, yet rational, humble man.
I will be running the 2018 NYC Marathon this November in memory and honor of this incredible father, husband, son and brother. If my father, David, could endure such an illness his whole life, I know his spirit and zest for life can help me complete one of the most difficult marathon courses. Please help me support the IDF - Immune Deficiency Foundation, as I honor my father’s memory and help bring awareness to Agammaglobulinemia and the hundreds of other rare immunodeficiency diseases.
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