Brian Fitzek

Author Archives

  • Live Life Well: Beyond CGD

    Caitlin Powell’s induction into the world of Chronic Granulomatous Disease (CGD) began around age seven. At that time, she was experiencing abdominal pain due to an inflamed appendix. During surgical removal of her appendix, doctors serendipitously noticed a large granuloma on her intestines. The next month involved a flurry of doctors’ appointments to determine why […]

  • Clues to a Timely CGD Diagnosis

    Chronic Granulomatous Disease (CGD) is a primary immunodeficiency which may present with infection or inflammation. Unfortunately, many people with CGD go undiagnosed for many years, oten resulting in periods of recurring infections for patients. The Clinical Immunology Society (CIS) has created videos directed towards primary care providers and specialists who may encounter a patient with […]

  • It Takes a Village to Manage a Primary Immunodeficiency

    “The old saying that it takes a village to raise a child is particularly true for a child with a chronic illness, such as Chronic Granulomatous Disease,” says Barbara Meade. Barbara should know–her son Joseph was diagnosed with Chronic Granulomatous Disease (CGD) at the age of two. This was the early 90s, the days before […]

  • New Resource for Those Living with a Rare Disease

    Today, one in 10 people are living with a rare disease. This week, a new website RAREisCommunity.com was launched for the more than 350 million people around the world who are living with a rare disease, and a place for each unique voice and journey to come together around shared experiences. Resources on the new […]

  • Summer Travel Tips for Families with CGD

    Summer means travel for many people.  Being diagnosed with chronic granulomatous disorder (CGD) doesn’t mean you have to stay home. It is best to consult with your physician if you are traveling, especially if you are traveling abroad, but with a bit of planning you will be on your way.   Medication and Supplies Medication […]

  • Special CGD Sessions offered at IDF 2019 National Conference

    IDF 2019 National Conference Join the Immune Deficiency Foundation (IDF) at our biennial National Conference for people with primary immunodeficiencies (PI) and their families—offering strategies for coping with PI, providing opportunities to meet other facing similar journeys, and presenting the latest science-based information about PI diagnoses and treatments. The 2019 National Conference will be held […]

  • UPDATE: CGD Emergency Relief Fund from NORD

    The National Organization for Rare Disorders (NORD) has expanded their assistance available to the Chronic Granulomatous Disease (CGD) community to assist individuals with CGD with limited resources to pay for some related expenses. To learn more about this program, click here. La Organización Nacional de Enfermedades Raras (NORD, por sus siglas en inglés) ha ampliado […]

  • Understanding Limitations of CGD but Open to the Richness of Life

    Children with Chronic Granulomatous Disease (CGD) often seem healthy at birth but develop severe infections in infancy and during early childhood. This was the case of Erik Mainville of Interlachen, Florida. When Erik was born, he appeared to be a normal, healthy baby. In those early years, however, he remembers many infections, pneumonia episodes, and […]

  • Fueling Advancements in Rare Disease: The Power of Partnerships and the Patient Voice

    Last week, to honor Rare Disease Day, thousands of people around the globe took time to advocate and raise awareness about rare diseases and their impact on patients’ lives. With only five percent of all rare diseases having an FDA approved treatment, there is tremendous unmet need that requires innovative collaborations and continued conversations across the healthcare […]