IT'S Christmaaaaaaaaas

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Hi Guys,
So it's nearly Christmas, 4 days to go! oh and Well done to suriving the 'End of the World'

It's going to be an especially good Christmas for the people with the G551D mutation.
As finally Kalydeco has been approved for people in England. What a brilliant Christmas Present, and a good way to start of the New year.
But sorry to burst the bubble, the campaigning still isn't over, as it still hasn't been allowed in Northern Ireland or Scotland. So we need to carry on campaigning for it to be allowed on prescription for people in them places! So carry on fighting for it to be approved there guys!

If you don't know what Kalydeco is, then i will try explaining what it does to the best i can. Correct me if i'm wrong.

Kalydeco is supposed to correct the CFTR (Cystic Fibrosis Trans-Membrane Conductance Regulator) in the mutation which is of course G551D. It is supposed to regulate the salt levels, as CFTR sits on the surface of cells lining the airways and other organs. The purpose of the protein is to regulate the flow of chloride ions across the cell surface to help hydrate and clear mucus from the airways.

In those with the G551D mutation, CFTR is produced but doesn't follow instructions from the cell to allow chloride ions out. This leads to the build up of thick sticky mucus that clogs the organs.

Kalydeco works by helping the CFTR channels stay open for longer, to help the correct amount of salt and water travel across the cell membrane, therefore stopping the production of mucous build up, which will stop further damage to the lungs as they won't be much more prone to infection. Not only this, but what i've heard from the trials, it is supposed to help weight gain as if you may or may not know, with CF it is very hard to put on weight or we struggle to maintain it, so we need a lot more calories to do so. Not only this but apparently it has made a dramatic improvement in Lung Function how amazing is that?! But the only thing is, it can not reverse any damage already done. So i'm not to sure if you still have to take Enzyme's and do Physio that is the bit that baffles me. But at the end of the day, if it stops further lung damage and allows weight gain, this is the start for a very successful Cure in to all the mutations to do with CF, and we can start to think and plan ahead our futures without the worry.

What has happened the past few weeks:
So seen as i haven't really updated on what i've dont the past few weeks, lets get started!
So i wen't on a College trip wooo! ;) but it was actually pretty fun!
We went to the Welcome Trust, to where the clinical research centre is and had a look around and see the new technology they have got, to help understand and get a more in depth view on different conditions and things. We managed to go to the lab, to where they discover new things for illnesses like Osteopirosis, MS, and Cancer. It is so mad how much research they do there, and find out new treatments every day to help different conditions. (Warning i'm going to sound cheesy now) I actually really appreciate the work they do! because without people like them putting there time and effort in to researching different conditions, they wouldn't be able to live normal lives, keep well and get past the stereotypical life expectancy's.

I managed to actually speak to one of the researchers there and asked about the gene therapy and what there up to un aware to the fact Kalydeco has finally been allowed woo, and the researcher gave me a sheet with all the gene therapy trials they are doing. It's actually amazing and so interesting, if you told me we'd get this far this soon in to finding a cure i genuinley wouldn't believe you but it's starting to come possible!

Apart from that adventorous trip, i haven't really done that much apart from go College and work my butt off! But we have thank god finally split up for the holidays, can't wait for a nice few lie-ins, College drains you out! Oh and i went to the Hospital, not CF related. Just about my back.
But i did go to the Adult Cystic Fibrosis Centre at Wythenshawe as there is a specialist Muscolo-Skeletal person there, which my physio referred me to, so she is helping me sort out my back problem. It is so nice! i know it's mad to actually say you like the Hospital but i mean like compaired to paediatrics (as i'm still there at the moment transferring to adults soon though, quiet scared!) it's so much more modern as it's just been built. It looks really, really nice!
i've got my CF clinic on the 27th such a weird date, so if i can and have the time, i will update you guys on that and how it all goes.
So that's it really not been up to much!

To everyone out there i'd like to say have a Good Christmas and a Happy New year if i don't get to update my blog before then. Oh and for all you cf'ers out there stay well, and stay bug free. If not, hope you feel well really soon!

I can't forget one of my quotes ,so here is my quote of the day: "Reach for the sky, set goals, live life to the fullest and always remember to wake up each day with a smile."

Also as it's Christmas and nearly new year, i think maybe just maybe you should start of the New year by signing up to be an Organ Donor. Come on guys, like i've said there is a massive shortage in organs out there for people who need them the most.
I might be hypercritical but maybe even if you really don't want to become an Organ Donor and you smoke give that up for lent? Because you're ruining your perfect healthy organs, when someone who's desperate for 'healthy' organs can't get them.
Although I'd absolutley love if you do both come on how brillaint to start the New year feeling healthy and good about yourself?!
 This is a brilliant reason why you should sign up, this is Alethea, and here is a before and after her Lung Transplant, look at the massive difference. She was given the second chance of life.
    I really hope this will change your minds guys.

                                            Lots of love, well wishes and Christmas Vibes
                                                                 Chantelle xxx

P.S Thank you so much for all the views i have had on my blog and the feedback also, i really, really appreciate it! Please carry on giving me feedback, viewing my blogs and sharing it to your family and friends. As the more awareness for organ donation and CF the more minds in to organ donation hopefully changed, and hopefully more people understanding what CF is. Thanks again!

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