National CF Awareness Month!

May has been declared National Cystic Fibrosis Awareness Month. I look at this month as an opportunity to share my story and spread awareness of CF.

If you look at my facebook page... you can tell during the Month of May I stay a little focused on CF.

Why? and Isn't it depressing? No.

Yes, it is sad thinking back to memories with friends with Cf that have passed; however, that is EXACTLY why May is so important to spread the awareness of how CF affects us.

I think of all the time I spend pushing CF awareness (esp. in the month of May) is for all of my friends who have passed away, its their memory that motivates us to make sure future generations with Cf have a better chance from the start!

Losing friends to CF, and not being able to see the ones that are alive ( due to bacteria spreading-its frowned against)is tough, the toughest aspect of CF. I would love to see my friend Laura, but we both know it is better to not be around each other.

We write alot, FB, email, etc. I'm looking forward to Skyping soon with her!

First blog: Hello

My first Blog: A little About Me I'm not sure why I have decided to start a blog, however, here I am. I have honestly thought about writing about my life for years, but have always chickened out. I have finally decided to share the experiences life has thrown at me. The biggest reason I have been asked to blog by people is because of everything I have dealt with medically. I have Cystic Fibrosis and a few other medical problems...This is probably the best reason why I should blog. I can relate to others who are dealing with medical problems, however,my CF is also why I did not want to write this blog. CF can be embarssing and annoying sometimes... but it has helped define who I have become to be as a person. Therefore, (yes, even though I want it cured) I don't hate having CF. Let me start off with some basic info and statements. I'm 26 yrs old and have dealt with CF all my life. In this blog you will hear recent stories (good, bad, embarassing); a...

Holding Down the Fort

My husband, Andrew, is currently at Wartburg Theological Seminary and is starting his first week of his second year there. Every year he lives on campus for one week. He enjoys starting each semester on campus where he can build friendships with other students and professors. It's the only time he is on campus. Usually he does long-distance learning, online, from home. It was the only way we could manage him doing a four year Master degree program while working. This week is the hardest for us. However, we have something on Thursday and Friday this week, so Andrew will only be gone 3 days instead of the typical full five. So that will make this week a bit easier than the other semesters. It's hard for Andrew to be away, although I know he is having a blast. We send random pictures back and forth like a book he may be reading or a game I may be playing with our kiddo. It is hard for the kid(s) to not see Andrew every day. We are foster parents and stability is a BIG issue for ...

Close to a Cure?!?!?! and Thank You!!!!!!!!

Help Us Find A Cure & Thank you! Lots of new meds and treatments are being researched thanks to the CF Foundation and the people who support it! Thank you soooo much everyone for supporting me and the CF GreatStrides Walks! I hope you enjoy hearing about the cool new ways steps are being taken towards finding a cure for CF and how everyone has helped me and us (the cf community)! New Treatments And Break Throughs: As you may know, from reading my last couple blogs. Some exciting news was released! VX-809 + Kayldeco Phase 3 (6 month clinical trials) has started! Which means if all goes well, this could be on the market in the next year or two. This drug helps target the actual faulty gene. It will help improve our lung function (hopefully gain some back, the part that isn't damaged) and will help us to slow the decline of our lungs health tremendously! This is the treatment for my mutations!To read more about this new treatment click Here! Also, there are other medic...

Cheriz: My life with Cystic Fibrosis

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