My Great Strides Story
I’m going to be very honest here: I’m sick of having to battle for every little bit of basic care for this disease.
I’ve been trying to get a single medication for 2 weeks now, and it’s the most basic medication there is when it comes to CF-pancreatic enzyme replacement. The same pill she has been taking since she was 3 weeks old.
I have spent hours on the phone with pharmacies, clinics, and liasons. It’s a full time job for a disease that requires much more attention.
I want her to have a normal life. I want her to be able to have a job, to go on vacations eventually, but right now I want her to be able to go on a class field trip without having to worry about there being a nurse available to go along and administer medication or be able to sneak a piece of cheese without it making her sick, or maybe go to Girl Scouts or a school play without me being there.
Insurance and medications rules her entire life and it needs to not be that way forever.
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Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.