[editors note: I would like to welcome Shannon to MylungsMyLife. I met Shannon over twitter a few months ago, and I have been talking to her a lot about how CF (AKA cystic fibrosis) and Diabetes, and since this week is Cystic Fibrosis Awareness week, it seemed like a good time to ask Shannon if she would like to go a guest post for me. So thank you Shannon for writing this post for me!]
Hi, I’m Shannon. I am 13 years old. I may seem a normal teenager right?
Well, I’m not really… I have Cystic Fibrosis and Diabetes. This week it’s Cystic Fibrosis Awareness week in the UK (24-30 June).
Cystic Fibrosis(CF) is a genetic disease, it affects your respiratory and digestive systems the most. People w/CF take loads of medications, nebulisers and some use the vest… Most CFers have one-three stays in hospital a year, my mum says I’m going in for a MOT!
There is hardly any awareness for CF. This needs to change! CF is a life threatening disease, but honestly did you know about it before I wrote this? You might have heard of Dalton Dingus? [note: remember the young lad who I blogged about at the start of they year? Who sadly passed away at the age of 9? I wrote about Dalton here and here] Or (Peter Andre fans should know) maybe Nadine Blake? No? Thought not! This is why we need awareness, I asked all my form class. “Did you know about Cystic Fibrosis before you met me?” In my class there is 27 people in my class, all of them said exactly the same, they said “No.”
I wrote a letter to my head teacher to see if we could raise money/awareness for CF in school, still waiting for my reply!
Some people say things like;
“Shouldn’t you be in hospital?”
“I’d die if I had to take that many tablets!”
“Is it contagious?!”
“But, you don’t look sick!”
“You’re just tired.”
“You’re a druggie!”
“You have Cystic Fibrosis? Why aren’t you locked up?!”
“Shouldn’t you be dead by now?”
“You’re just attention seeking.”
Yes, I’ve had them all said to me. 😞
Organ donation is very important with CF. Many people w/CF need ‘new lungs’. People don’t realise how important organ donation is! Other people without CF need organs so you could be helping anyone! So please sign up to the organ donation register!
How you know you have Cystic Fibrosis:
Ps Ceftaz [note: this is an antibiotic used to treat Pseudomonas aeruginosa, which is a bacterial infection which can be found in the lungs of people with CF] does smell like cat pee! 😊
I was diagnosed at 4 weeks old, in 1999. I wouldn’t eat or drink. My mum and dad took me back to the hospital, I had some tests and I was diagnosed, simple right? Not really. My mum and dad had to schedule all work/play around me. I had a huge, loud nebuliser and loads of medication (liquid form, of course!), as a child I hated the fluclox [note: fluclox is short for flucloxacillin, another antibiotic] I had to have, apparently it was strawberry flavour, erm no. Now I have them in tablets.
Using social networks, (Facebook, Twitter etc) I have been part of the DOC – Diabetes Online Community, and CFOC-(just guessing here, it doesn’t actually have a name:)) Cystic Fibrosis Online Community. The following people have helped me-
@pinger_genguin (Jenni – MyLungsMyLife)
Give them a follow:)
Thank you for reading,
@ShannonFurbee12 (Shannon- D, CF and Me.)