Friday, 2 November 2012

New Girl on The Blog...

How do you do! My name is Faye, I'm 32, married to the Man of my dreams Benjamin for 8 and a bit years, and we have four beautiful (healthy) boys together. They are my world, My Boys Brigade!

"Whatever does 'CF Mudda' mean?" I here you say! Well please do let me explain; I have a degenerative disease called Cystic Fibrosis. I have created this blog to share my journey with you in a hope it raises some awareness about CF. You don't have to be a mother to be a MUDDA! It's a state of mind. This name is a homage to all of those to continue to fight the good fight, who breathe as much as they can and who never NEVER give up! It's a tough school, but we can handle it. Cystic Fibrosis effects all organs of the body, but most particularly the lungs and digestive system. The average life expectancy for people with CF is around 40.  CF patients need to take a barrage of medicines to stay healthy, as well as loads of physiotherapy for our lungs, which clog up with excessive mucus, causing a chronic cough. Our lives have revolved around hospitals and chest infections and ultimatly we need to have a double lung transplant to live...
However, I don't wish to dwell on the trials so much as the New HOPE that comes in the form of two little blue pills a day, KALYDECO Kalydeco.com. This is an orphan drug (meaning the first of it's kind) that address the underlying cause of Cystic Fibrosis. It's equivalent to insulin for diabetes. It has transformed my life, our lives! In this blog I will share my Revolutionary journey. The ups, the downs ... it's pioneering territory so who knows what tomorrow will bring? But I'm sure glad I've lived to see this day!!
There is so much to cover and I'm excited to begin this blog! I hope you will join me as we move towards a better brighter future for Cystic Fibrosis.
So till next time I'll leave you with the sounds of a great songstress, Tracy Chapman. 'Talkin' bout a Revolution' ... Cystic Fibrosis as we know it is changing, Finally the Tables ARE starting to turn!!! There is so much Hope to be had.... xox





5 comments:

  1. Nice job, Faye! Love the name of your blog and the artwork. We look forward to more posts from you!

    ReplyDelete
    Replies
    1. Thanks do much Teresa! I hope I can contribute something positive to CF awareness and spark hope for our community. Where there is life there is hope! xo

      Delete
    2. Thanks (do?!) SO much Teresa! :)

      Delete
  2. Hi Faye, Just catching up with things after a busy week. One of the highlights has to be this fantastic blog. Lovin it!! Keep it up, Marion x

    ReplyDelete