My path to a total colectomy was long and challenging. Now I want to share what I learned about self-advocating for necessary medical care and coping with a surgically created opening on my abdomen called a stoma.
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I have faced numerous health challenges in my life, including a recent diagnosis of osteopenia. Despite this, I am resilient, grateful, and determined to take care of myself while finding strength in the cystic fibrosis community.
Advances in cystic fibrosis care have been life-changing for me, and I’m grateful to breathe easier with a CFTR modulator. However, I began to experience new issues in the past few years, and I am left wondering if it’s a side effect of the CFTR modulator or something else.
The Foundation, in collaboration with external community advisors, finalizes recommendations in area of Community to help foster more inclusion and improve the experiences of Black people living with and impacted by cystic fibrosis.
It took a lot of self-advocacy — and a lot of medical testing — before I received a diagnosis of CFTR-related disorder. Fortunately, my parents supported me as I went from specialist to specialist and finally got my diagnosis.
My children’s experiences being African American with cystic fibrosis motivated me to speak out and ignite change for families who are Black, Indigenous, and people of color (BIPOC) in the CF community.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
Since 2011, the Foundation has awarded $2.5 million across 35 different projects to improve cystic fibrosis newborn screening across the country.