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.
Lin Marando
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5 min read
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.
Christa Lux
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6 min read
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.
Natalie Keas
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6 min read