Being heard: CF and diagnosis when your African American

It's 2023, surely now people of color are correctly being diagnosed with cystic fibrosis right? Nope. They are still underdiagnosed. We hear about it happening in low income countries, but it's happening right here in the USA.

Rachel Alder was diagnosed barely 5 months ago, at age 26. She was misdiagnosed until January 2023. Rachel was born before newborn screening could detect CF. And, because not all mutations are under represented in testing, her diagnosis would still most likely have been missed. We have to change this.

Rachel Alder today, or Rae as she likes to be called has been an advocate her entire life. Rachel, who is African American. It is still unbelievable to those of us advocating and raising awareness about the disparity in diagnosis in people of color, it is still happening. As a reminder, anyone, regardless of race can be diagnosis with cystic fibrosis. The number of people diagnosed with CF is certainly higher than is what currently reported. Rae is a transracial adoptee, which means she was adopted by parents who are a different race. Rae identifies as queer, and a full time CF Warrior.

In the beginning of her career, she worked on diversity victim advocacy with survivors of sexual assault, human trafficking, and domestic violence. After her January CF diagnosis, she started focusing on patient advocacy, and specifically on health equity. Rae herself overcame racial bias, health disparity and a decline in her own health until her diagnosis.

National Organization for African American's with cystic fibrosis: https://noaacf.org

Children's Organ Transplant Association: https://cota.org

Bonnell Foundation CF Master Class: https://cfmasterclass.org

Bonnell Foundation website: https://thebonnellfoundation.org

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Information about Institute for Economic and Clinically Review (ICER): https://www.engagecf.org

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