• Tim Blowfield posted an update 2 months ago

    Great to hear Terry is finally getting treatment that was denied him for 54 years because the misconception that blacks do not ‘get’ CF. My wife suffered for 10 years longer than she should have because of the misconception that Cf was a kid’s disease. Finally at 67 she was diagnosed. All people have the CFTR gene – and as such mutations should be expected in all people – white, black or asian. Just what the mutations are will vary as will the predominate mutations.
    How many older people are lying in Nursing Homes with Chronic bowel and respiratory disease which is undiagnosed CF?
    How many PWCF have symptoms that are caused by the faulty CFTR but the symptoms are ignored and not treated well because they are considered unrelated co-morbidities? All because CF is considered by too many to be a lung disease.
    There is much we don’t know about this chameleon of a disability. We need our clinicians and researchers to broaden their vision and see how the faulty CFTR affects every cell and organ in the body.

    • The questions you asked here are deeply powerful, and ones I have wondered myself but honestly felt “silly” asking because the stereotype of CF as a white, young, female disease (at least that’s what Instagram shows it to be sometimes? lol) is so pervasive.

      Thank you for continuing to challenge us and open our minds and hearts to the pertinent “How Many”s we need to consider.

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