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. KymberlyMarch 2, 2013 at 5:26 AM

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

    ReplyDelete

Post a Comment

Popular posts from this blog

Today's BIG Appointment

 I discussed last week about my recent struggles & goals. I have been dealing with a lot all at once! Family planning (update on that in 2 weeks), my Grandma's funeral, lower lung function. Through it all I have remained very compliant with my meds! My health is VERY important to me. So this last weekend I took my vest machine, wabi sterilizer system , and packs of ensure to my parent's for the weekend. I wanted to make sure I did everything. While it was a sad occasion, it was still pleasant seeing almost all of the family together again. Actually 27 out of 29 of the cousins made it to the funeral. Grandpa is in the middle of the picture (can you find me?) LOL   On top of my medications I have been doing some dancing & walking, but no jogging or anything. I'm still counting calories on my fitbit (hitting over 3000) a day (& 40 grams of protein, 50 grams of fat at least). I knew I was feeling a bit better than before, but wasn't sure what to expec...
18 comments
Read more

Video Blog: Life in the hospital (as a child)

The daily life in the hospital! Most people cringe at the idea of a hospital. However, when I was little I never minded going into the hospital. I usually would have at least one other friend with Cystic Fibrosis to hang out with there (before we knew about the "CF Bugs"). I didn't love being sick, but I loved my CF friends that I would hang out with. Also the hospital, nurses, and my parent's tried to make it a "normal" environment. I got up and put on cute clothes, "walked to school", flirted with a couple CF boys, did homework, came "home" (back to my room), my friends would ask my parent if I could go play with them. We'd hang out in the play room or go on a walk with one of my parents! My dad loved taking me on walks and I LOVED going on our walks! Here is a video blog of the route we took and bit of information on what is was like growing up (for a chunks at a time) in the hospital! (it is posted via youtube, let is dow...
3 comments
Read more

Beginning of the Year Troubles

Normal "beginning of the year" troubles for Andrew and I only really consist of one topic: Our Deductible [please no Obama, or government bashing] I've always had high deductibles ALL MY LIFE (no matter who was president). The problem is I hit my deductible within the first week of January. In the past I have always prepared for this and since I was still on my father's insurance (up until last year) he typically paid the bill (at least for medical stuff). And in the future Andrew & I won't have such an issue with this. We will be able to save and plan ahead for the $3,000 (for my deductible, his is another $3,000). However, this year was more difficult. We saved all 2013-2014 for our wedding & honeymoon, plus had our deductible saved too. But Real Estate was a pricey career to start, I've put almost $5,000 into it (classes, dues, licensing, exam, advertising, etc). So needless to say our deductible disappeared, thanks to my new career. Wh...
10 comments
Read more