Skip to main content

2 birds, 1 stone & closest thing to a cure thus far.

2 Birds, 1 Stone:

What a horrible saying, killing 2 birds with one stone. Would take some talent, but still horrible all the same. However, that is what I'm doing today! I have my pre-surgical docctors appt this morning at 9:30am in Hoffman Estates, and then I have my specialist appt for my Cystic Fibrosis Arthritis this afternoon in chicago too. I'm very excited about the 2nd one. CFRA has been bothering me a lot more lately and it drives me crazy when it intereferes with my jobs or plays rehearsals. There isn't a lot of information on it. I posted a couple articles in a couple posts a couple weeks ago. Its like CF-related Diabetes. It not type 1, its not type 2, its a new, thrid, mutated type!

If you think about it, CFers definetly have enough weird mutations, that we make some awesome X-Men! Also about the CF Mutations...

As you may know, there are thousands of different mutations that can lead to CF! As research is being done, some new drugs are being targeted to try correct or prevent the underlining problems the mutated genes cause, and so far Kayldeco has made it to the shelf for CFers! However, that one doesn't help with my mutations. However...

This was just released about the newest research for my mutations:
"Vertex Pharmaceuticals Inc. announced the Phase 3 clinical trials of Kalydeco™ in combination with VX-809, a CF drug in development. The combined therapies are designed to treat the underlying cause of cystic fibrosis for individuals with 2 copies of the Delta F508 Mutation." - for more information, read complete article HERE!

I'm very excited about this and can't wait to see how the 6 months trials go!

I will blog again soon to let you know how my appointments went and will be posting more information about the CF Walk that is going to be just 15 minutes away from my hometown (and hopefully, to be IN my hometown in 2014)! Whoot Whoot!


Comments

  1. That is awesome news about the new med. A cure would be amazing!

    ReplyDelete

Post a Comment

Popular posts from this blog

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...

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...

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 ...