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

Updates Galore!

Big News, Big Times, Big Change: I had my post hospital Doctor's appointment on April 21st and it went well. I posted a video on my CF facebook page. My weight is back on track, heading up. Also, my lung function was around 55%, so that's almost my baseline. I got to take my needle out that night. OH BOY!! I loved being needle free! Whoohoo no more IVs!!!!! In the last week I have been super busy with a few different things. 1. Work. I have a new client AND I had all my post licensing webinars & exams this last week! 2. More CF Foundation Volunteer work. I held a presentation in my home town, where I discussed CF, the different mutations & severity of classes, as well as fundraising for great strides. I talked about the history of the CF foundation, care centers, and more about our local IL CF fundraisers. Overall, it wasn't a big turn out, so I was a little bummed. My hometown has always supported my CF cause, so it was disappointing not to have a good numb...

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 ...

CF isn't all tears and saddness. Get a Full Picture.

  CF and Laughing Cystic Fibrosis can bring sad times and times of tears (like losing a close friend with CF, etc) BUT, it can bring so much joy and love. I've noticed most people love to talk about the people they meet while traveling. This is usually, because they have learned something from the person. Or the person is considered unique to them. I can do the same thanks to my Cystic Fibrosis. I may not have traveled much in my life thus far, but I have learned mountains of lessons from my CF. [Picture right:  Me ready for surgery in 2nd grade!] Forgive my shoutouts (but I must recognize a few amazing people) I have met some of the most amazing doctors: Chatrath, Dr. B Nurses: Sara & Marie (from Clinic), Lizzard, Melody (best IV stick ever), Deb, and Kris (you know a nurse is amazing if you love her after putting tubes down your nose!) Respitory Therapists: Jeannette, Lanell, and Don (you da Man) And Cookie Marrow (Musical Therapist- She would sing to me a...