“Living with chronic granulomatous disease (CGD) has helped me become who I am. I’ve learned more responsibility,” said Casey, who was diagnosed with CGD, a primary immunodeficiency, at four months old.
IDF played an important role in providing a sense of community for Casey, especially during his youth. He served on the IDF Teen Council, which eased the feeling of isolation, attended conferences, and recorded a Reel Story in which he discusses his journey with CGD.
“Once I started serving on the IDF Teen Council, I loved it. The friendships I made on the council and with IDF, I still maintain today,” he said.
Inspired by his experience with IDF, Casey is a patient peer mentor these days and often speaks to individuals and families with CGD.
o 0:00 Narrator: Primary immunodeficiencies are a group of more than four hundred and fifty rare, chronic disorders
o 0:05 in which part of the body's immune system is missing or functions improperly.
o 0:09 At IDF, it's our mission to improve the diagnosis, treatment, and quality of life
o 0:14 of people living with primary immunodeficiency.
o 0:17 But some of the most daunting tasks before us lie in reaching
o 0:21 those who don't yet know they have a primary immunodeficiency.
o 0:24 Jorey Berry: Studies estimate that between seventy to ninety percent
o 0:29 of people worldwide with a primary immunodeficiency do not have a diagnosis.
o 0:34 When I visit with members of our community, almost without exception,
o 0:39 I'll be told that it wasn't until an IDF event that they met someone
o 0:44 for the first time -- ever -- with their condition.
o 0:48 For everyone affected by PI,
o 0:50 IDF is a portal of hope, connection, and solutions.