CF Awareness Month

It's officially May 1st, which means it's Cystic Fibrosis Awareness Month. Because CF is a rare disease, very few people know about it who are not directly affected. CF Awareness Month is a time set aside each year to spread the word about cystic fibrosis, what it means for those who deal with it on a daily basis, and how people can help find a cure. In the spirit of the month, I've dedicated this blog to posting pictures that I've found on the internet that are working to raise awareness of our fight. I encourage you to post these pictures on Facebook, twitter, or Instagram so that your friends and relatives know that you're working to find a cure for CF!

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CF Letter 2019

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb ...

CF Letter 2020

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr...

Traveling abroad

In May, I will be going on a mission trip with my church to the UK. I'm so excited to be a part of this mission team!! I know that God is going to work in and through us for His glory. However, I can't say I'm not nervous about taking care of all my health stuff while I'm over there. This will be my first international trip without my parents and first time to fly with all my medical equipment by myself. Even when my band flew to Seattle in high school, my mom was a chaperone and helped me check baggage, go through security and lug all my equipment around. This time, I'll have to manage all of that on my own (of course, the other team members will be with me, but I'll be the only one intricately connected to my CF and who actually knows what all I have to bring with me on the trip). On top of that, when we went to Europe for my make a wish trip, my Vest and compressor "burned up" due tonthe voltage difference, even though we used the power converter li...

Blue-Eyed Breather

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