A new treatment for patients with X-linked chronic granulomatous disease (CGD) fighting infections that don’t respond to intensive antibiotics could be on the horizon—but researchers need help from members of the CGD community to complete a clinical trial. About 5% of individuals with CGD experience fungal and bacterial infections that don’t
Read MoreHarry McLachlan shows off his firefighter outfit while at a Sydney, Australia hospital where he received a bone marrow transplant. Bevan McLachlan tracked his son Harry’s health in a spreadsheet after learning the toddler had systemic juvenile idiopathic arthritis (SJIA). He monitored daily fevers, activity levels, and diet. “Because at that
Read MoreTaylor Kane, 25, is a carrier for adrenoleukodystrophy (ALD) and founder of Remember The Girls, a nonprofit that supports women impacted by X-linked conditions. ALD is a rare genetic condition that damages the membrane that covers nerve cells responsible for brain function, and Taylor’s father, John Kane, passed the condition to her. Diagnosed
Read MoreKathi Narlock still has the meticulous notes she kept on every fever, illness, medication, treatment, and diagnostic test her son Nick Narlock experienced during his childhood. Diagnosed with chronic granulomatous disease (CGD) as an infant, Narlock required hospitalization over a dozen times. His hospital stays lasted days to months and were
Read MoreAbout half of all people diagnosed with chronic granulomatous disease (CGD) develop colitis, an inflammatory bowel disease (IBD) that causes abdominal pain, diarrhea, fatigue, and unintended weight loss. Because traditional treatment such as steroids poses risk to people with CGD, researchers at the National Institutes of Health (NIH) aim to
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