CGD Used to be a Death Sentence, Until Women Like This Took Action

It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in.

This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode on Chronic Granulomatous Disease (CGD) as part of the show’s “Behind the Mystery of: Rare and Genetic Diseases” series.

“The Balancing Act” finds and provides answers to help people balance their busy lifestyles. Through demonstrations and interviews with field experts, series hosts, Julie Moran and Olga Villaverde, offer solutions to relevant topics featuring family, food, finances, health, and more.

And this summer, they brought CGD to the forefront. CGD is an extremely rare inherited disorder that leads to chronic and repeated infections because immune system cells (called phagocytes) are unable to kill some types of bacteria and fungi. Though the condition is often diagnosed in very early childhood, teenagers and adults could also be diagnosed with a milder form in their later years.

LA Staples Center Arena
The rarity of chronic granulomatous disease can be pretty startling. Based on research from orpha.net, 1/217,000 people worldwide are diagnosed with the disorder. In other words, all the world’s CGD patients could fill the LA Staples Center 5 times! Source: Wikipedia

Through increased awareness and increased treatment options over the years, CGD lost its name of being called “fatal granulomatous disease” due to efforts like The Balancing Act’s educational video series.

This specific episode featured Dr. Daniel Ambruso, a Hematologist and Children’s Blood Disorder Specialist, and one of his patient families with CGD.

Important questions were answered, such as “What is this disease? Why is it so serious? And what is it like to care for a child with CGD?” These questions were asked in the hope of uniting patients, physicians, and scientists with research and education, while advancing the way our health care system works for those who are diagnosed with rare, genetic diseases.

Because of a heightened awareness among doctors; advanced treatment options, diagnostic blood testing, CGD survival rates have increased allowing patients and their caregivers to live and manage their diagnosis well into adulthood.

To watch the full segment featuring information on CGD, check out The Balancing Act’s full length inverview with Dr. Ambruso and a CGD family.


If you are learning of CGD for the first time and shocked to see just how rare it is, share this article along to help educate your social universe!

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