Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones.
Site Search
During our family round trip from Oklahoma to Florida, I learned a thing or two about traveling with a CF tot.
The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.
Thinking of how you will take care of your health while traveling with CF can be very intimidating. For 28-year-old Stacy Motenko, preparation is the key.
After what seems like an hour and too many clicks to count, you finally did it. You booked your flight! A couple weeks leading up to your departure date, panic starts to set in. You go into operation “no one better get me sick” mode.
Hear how frequent flier Stacy Motenko keeps herself organized as she turns traveling with CF into a manageable affair.
I grew up on a farm in the countryside in Sweden. My younger brother also has cystic fibrosis, so money was always a little tight in my family, due to the costs of treatments. My classmates would often brag about places they had been on their vacation, England, Stockholm, Greece, and I was very envious.
Planning a last-minute vacation before the end of the summer? We’ve got you covered! All week long we’ll be sharing tips, advice and personal stories on traveling with CF.