Jenny Livingston
Forum Replies Created
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I was so happy to wake up to that news today, Lizzy! Such exciting things are happening for the CF community, world-wide! I’ll definitely check out your blog.
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It’s so exciting! Every time I hear stories like this or see the research (Dr. Boyle’s presentation at BreatheCon was awesome) I get so giddy!
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I used to be soooo jealous that my older sister got to drink Ensure. She really needed the extra calories, and I didn’t. My family had financial assistance to get Ensure for her, but it wasn’t enough for the rest of us kids to indulge in what we thought was a delicious treat. Flash forward about 20 years to when I had to drink entire cases of it to maintain my weight (particularly in the hospital). Thankfully this isn’t an issue for me anymore, but for several years I remember thinking, “why in the world did I EVER want to drink this??”
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@lizzy I understand your concern, and I can’t imagine the mix of emotions you must be feeling. I’m 32 with CF, and this drug does target my specific gene mutation, but I have several friends who are in that 10% who aren’t eligible. I think it’s so important to keep fighting and raising awareness, even as we celebrate this victory. There is still a lot of work to be done!