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Monday, 16 February 2015

My Thoughts on Organ Donation


(best explanation of organ donations if you ask me!) 

Hello,

So organ donation? you've probably seen adverts about it's importance, heard people talk about it or even may have been affected by it in some shape or another.

Understanding the importance of organ donation came to me in quite an odd way. Back in 2011 (or 2012) I found Emma Jane Kingston 's Bebo or was it her initial Tumblr? (I can't remember) and I was drawn to her infectious, happy, go get them personality and instantly started to have regular conversations with her. We spoke about boys, similar programmes we had watched and the general chat about life. At first her condition didn't strike me or give me a reason to talk to her, I didn't find out for a while to me she was like every other girl our age and she had the ability to make time for anybody who she came into contact. Emma in fact had Cystic Fibrosis, a life-shortening inherited disease which affects over 10,000 people in the UK. At the moment there isn't a cure for Cystic Fibrosis but there is many treatments available to manage it for the time being. However a double lung transplant is essiential for them to have any kind of 'normal' life.

Each week five babies are born with cystic fibrosis, and two people die

If anything Emma introduced me to this condition and I started to watch her regular YouTube videos which educated me more than research papers, news reports ever could about the condition and the real importance of being a organ donor. Read more about Cystic Fibrosis over on the Cystic Fibrosis Trust site, http://www.cysticfibrosis.org.uk/. I think it's far more effective to hear someone so young and involved talk about their condition with an ability to just shift our perspectives on a huge scale through places like YouTube.There are so many reasons why we should talk about transplantation so much more than we already do, it's important to pass that information on to our next generation along with our friends and families.  

(one of Emma's youtube videos about the condition please watch!)

Sadly Emma passed away on July 8th 2013.

I miss her, it's been over 2 years now and I can't quite believe it's been that long without her. I'm gutted we never met in the flesh, ever shared a night of cocktails and before receiving a new set of lungs to better her chances of a longer life. I miss having the conversations we shared and her general being to support anybody who needed it. Emma never made anybody feel alone or unloved. If somebody deserves to still be here, promoting the importance of organ donation or to spring on some wonderfulness into the world then it has to be Emma Jane Kingston. I miss the witty, infectious personality on Tumblr and on YouTube. Actually it was days before her decline that we had spoken about organ donation and how she wanted to promote it so much further after doing a local Radio and TV interview. That footage still brings me to tears, it all happened too quickly. 


It makes me angry that 18 people die everyday waiting for a transplant.

1 organ donor can save 8 lives and change the lives of more than 50 people.  

Surely those scary statistics are enough to make you want to sign the register? 

 I talk to people who wouldn't even consider being a organ donor and it's those I ask why? 


When you die you won't need your organs wherever we go next and there's so many lives that could be saved by you signing up and signing your organs to somebody who waiting for something to change their life forever. Imagine being the hero of somebody who has Cystic Fibrosis or somebody with a heart condition, that could be you. So sign up.



I still have friends around me who suffer with the same condition, are awaiting new lungs or DO have new lungs. There's so much we can all do by passing on the word and importance.. 

'Hope for More' is a really interesting report into Cystic Fibrosis and lungs transplantation, check it out on the Cystic Fibrosis Trust website. There is also a programme on BBC at the moment called Transplant Tales which gives you a great insight into organ donation, definitely check it out.

Written in loving memory of Emma Jane Kingston,

1992-2013 


'There is a light and it never goes out'


p.s if you want to be a organ donor head over to the NHS Organ Donor Register website.

thanks for reading,

6 comments:

  1. I can't honestly say how amazing I think you are, for raising so much money, and for having the confidence to talk so openly about this!
    I know I already said on Twitter, but nearly 14 years ago my Father was lucky to receive a double-lung translplant, and I am thankful every day that he is still with us because of this. It's something that I have always thought about blogging about but never found the right words to say.
    I am so sorry to hear about the loss of your friend, but please take comfort in the fact that if even one person signs the organ donation register because of her, because of this blog post etc, then that's one more father/mother/friend/sister/brother/ etc etc etc to gets to carry on.
    So much love to you :)
    Bowie-Marie
    Disastersofatwentysomething.wordpress.com

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    1. It's good to talk about a subject which is so sensitive for young people to consider and talk about.
      That's so great and i'm glad he is still around for you and your family. It is definitely difficult to talk about though :\ I look forward to one of the girls I mention writing her next blog post as she had a transplant last night and have heard she's already been talking to people and is in high spirits.
      That's v.true! thankyou for leaving such a lovely comment, it's really appreciated.

      Em xx

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  2. This is such a lovely post! I registered to be an organ donor a long time ago because it just made no sense to me not to but you're right, we don't talk about it enough. And its so easy to do as well, its not even like giving blood which takes up your time, you literally won't know any different! x

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    Replies
    1. Hi Hannah,
      I saw this comment and forgot to reply, apologises! Yeah exactly, once it's done it's nothing you have to think about. It only matters when you've sadly passed away and it's the decision of those you've left behind. I wish it was spoke about at schools especially :\

      Em xx

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  3. Wow Emma, the first thing I'm gonna do after I finish this comment is sign up for a Swiss organ donor card! I meant to do it for five years or so, but always procrastinated. But you made me think, if I die in a car accident tomorrow without a donor card, my young and healthy organs will be wasted and burned forever...
    How does organ donation actually work in the UK, do you have an opt-in or opt-out system? In Switzerland, there are hardly any donors because it's not promoted at all, you have to make the active effort of getting that card, which no one does out of laziness. If everyone was opted in automatically when getting a driving license and opting-out was what needs active effort, a lot more people would be donors!

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  4. This post made me so emotional. I'm an organ donor and this is the reason I am. I can't believe in 2017 people who can be aren't organ donors and the only reason for them not being is because they can't be bothered or never thought of it. Being an organ donor is one last donation to hopefully save or improve a life. What a beautiful post xx

    http://www.abeautifulchaos.co.uk

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