Let me explain…

ImageIf you were to meet me face to face, you would simply see a 32 year old female. I am a mother, a wife, and also a fighter..not the average 32 year old.

I suffer or live (however you want to put it) with Cystic Fibrosis, I did not have
trouble when I was younger, now is a different story,more and more I start to feel it
dragging me down, almost like I’m drowning in it.

This is only the start of my story.. I hope everyone will give me a chance to show what living with CF is like.

RIGHT NOW I want to bring to everyone the attention of Kalydeco. It is a new card in the deck of cf. It is the only known medication to treat the underlying cause of CF. The only problem it is only approved for one mutation of this disease and one pill is $400. It is also not funded in Canada and Australia right now. Can you imagine having to to pay to live. If you have the mutation that I have G551D you are eligible for this Medication but if you cant pay or get insurance you die..Sorry for being so dramatic, but this is my life and others like me who we are talking about. I have the good fortune of having private insurance that will cover such a cost, but if my husband ever loses his job for whatever reason, my life line will be cut and I will leave behind my two young children.. My lung function has gone up %20 in the last 5 months since I have been on it. Last year I was being assessed for a lung transplant..I can not ask everyone enough.. PLEASE HELP bring awareness to this disease..

My blog will not always be so sad, but they wont always be happy either, they will just be..

Thanks for reading..every little bit helps.

 

 

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One thought on “Let me explain…

  1. We have so much in common! I am older but none the wiser 😉 I am 34 a mom to 4 diagnosed at 3 months but growing up CF was just a word that was occasionally tossed around. Age 32 it hit me like a ton of bricks. The insurance, lack of help….I get it! Keep up your blog when you feel up to it, I love reading it!

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