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

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...
2 comments
Read more