March... DAY 1

white rabbit.. white rabbit.. white rabbit!
Here is march's photo a day challenge 2013

is it really the beginning of yet another month already?!
where does the time seem to go? flying by and it just seems to be going faster and faster!

i had a crazy mental moment earlier on today when i realised i am closer to being thirty than i am a child now! i know i am only 19 and have 10 years and 4 month left but still.. crazy thought for someone who has Cystic Fibrosis.

When i was born the 'average' life expectancy of a child born with CF was 16 years old. Now it's mid 30-40's meaning i should be hitting my midlife crisis right about now ;)

HOWEVER modern technology and medicine is absolutely incredible. there was a time adult CF units just weren't needed, children didn't make it to there 3rd birthday and they were classed as the 'lucky ones' that did.

These days they've found a new drug that i am not 100% clued up on myself so please don't trust me or quote me on this..

There are clinical trials taking place on a drug called kalydeco. it's a drug that helps repair the faulty gene that causes Cystic Fibrosis. The damage already done will never be undone but if it is something that will prevent further damage.. it's incredible. I have heard so many amazing stories about people on the trial. let me make one thing clear, in Cystic Fibrosis there are thousands of different faulty genes.. just like there are thousands of strains of the common cold. Kalydeco is currently being trialled on one of the faulty genes causing CF. It won't work for us all but it's a huge step in the right direction for something to work in the future for the rest of the genes.

I don't know what my gene is and should probably be clued up on the specific genes but if i am truthful with you all, it's not something that sticks well in my head. i think it is so varied and complex that i just don't feel the need to know all the details. When my name and numbers called to give a wonder drug a try; I'll have a more detailed look then.

Meanwhile.. I'm good loving the life i live. Wise words off an old friend.
If you're interested in reading a blog of a patient from my CF unit at Wythenshawe please give this link a copy and paste (if not working directly)
I'm sure he won't mind you taking a nosey. Please have a read to see just how wonderful this wonder drug is! I'm so please it seems to be doing the job for you Woody!

DAY 1:- clock

One of my favourite time of day. Dinnertime!! Today's dinner consisted of a veggie full brekkie! Toast, beans & 5 hash browns.. Delicious!

Today i learnt a few songs on my ukulele which i have named billy bob <3 br="">He is wonderful and i am feeling pretty damn pleased with myself at my achievement of learning "somewhere over the rainbow!"

Night night bedbugs..
Sophie xoxo
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1 comment:

  1. Cheers Sophie! Hope they're looking after you in hotel Wythenshawe x