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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Breadth of expertise in business, philanthropy, community engagement, and venture capital to help advance Foundation’s mission
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 antibiotics used to treat nontuberculous mycobacteria made me choose between the risk of hearing loss versus the reward of better lung health.
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.
A transformative leader for more than two decades, Marshall will transition to advisory role
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.
Ad hoc patient advocacy coalition provides comments to Pennsylvania’s Insurance Commission to inform decision making regarding the state’s essential health benefits benchmark plan.