Changes in the structure or number of chromosomes in certain cells of the bone marrow.
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Research supported by the Knights has shaped best practices in prevention, early-detection, and treatment strategies for cancer, benefiting people with FA and providing far-reaching benefits for the broader population.
It took me weeks to come to terms with the fact that there were no easy answers. I couldn't change the past or the diagnosis, so I focused on educating myself and becoming Tinslee's biggest advocate. We underwent all the necessary tests, scans, and procedures, and spent a year going in for lab work and check-ups.
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.