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Posted By : CF Mudda - 11/30/2012 6:42 PM
Hello everybody!
I'm from Australia & have had CF since I was 6 months of age. I've started a blog to share my story in a hope to raise awareness about CF, having children & the incredible changes I'm experencing on new CF medication; Kalydeco.
It's a whole new era in treating CF, exciting times!!!
I'd love you to check it out if your interested & please do share if you like it :)
Thank you & take care. xo

http://cfmudda.blogspot.com.au/?m=1 wink wink

Posted By : Gemsi - 12/2/2012 8:04 AM
Hi there,
 
WOW, 4 sons!! What an impressive achievement. (having any children is an achievement in my eyes. :))
 
I have heard lots of good things about Kalydeco, I'm glad you are one of the lucky few who it works for. It seems to be an amazing drug and very close to an actual genetic cure with how it works. :)
 
There has been a lot of problems for people getting Kalydeco in the UK. The NHS won't fund it, though Vertex is giving it for free on compassionate grounds for those on the lung transplant list. Those who are on it have reported great improvement. :)
 
Nice to meet you and and I do hope you continue posting with how your health is progressing with Kalydeco. It gives hope to those of us with DF508 as they are in the trials for making a version that treats more of us.
 
Stay well
 
Gem :) x
Hey, I'm Gem with CF, age 25 and diagnosed at 2 years old. I'm from the UK and say weird things sometimes. I'm no expert but I've lived through a lot of CF stuff.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type thing.

Posted By : CF Mudda - 12/2/2012 8:36 PM
Hi Gem!
Nice to 'meet' you! Thanks for the warm welcome!

I know! 4 sons is a busy life wink but I wouldn't have it any other way. They keep me active, motivated and it's lovely to look after other people for a change!

Kalydeco is brilliant for people who have G551D. Took me ages in Australia to get on the NPP (compasionate program) but it was worth every effort. It's looking good for the 95% of the CF population with a new Vertex drug being developed for Del508. It's a bit of a wait, but not too far away...

I am part of FB group that are lobbying for Kalydeco to be approved in Australia and the UK. So many people in desperate need, these new meds can't come fast enough!

Hope your keeping well! Thanks agan Gem :-) xo

Posted By : akhstinebaslan - 12/5/2012 4:34 PM
Hello,
I am a high school student taking AP Biology. I am doing a project about Cystic Fibrosis and I was wondering if I can ask you a few questions. If you are willing to share some information, like how your life has changed and the things that you may not be able to do because of cystic fibrosis, then please let me know. Also, please let me know if there is anybody else I can talk to if you may not be willing to share this information. Thank you.

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