1 Mar, 2017 @ 13:01
1 min read

Brave British expat with cystic fibrosis urges support for campaign to legalise pioneering US drug in Spain

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another-hospital-stay-to-get-rid-of-infections-1A BRAVE expat is pleading for help after being denied a vital lung transport operation.

Becky Baker, who has cystic fibrosis, currently relies on an oxygen mask to breathe.
The 32-year-old, from Coin, is asking Olive Press readers to get behind a nationwide campaign to legalise a pioneering new US drug called Orkambi.
She is also searching for someone who may be able to help her find alternative medication.
Thank you for helping to raise money for a cure for Cystic Fibrosis! xx“I just want to live,” said Becky, who moved to Spain with her mum Sarah Spencer from Burnham-on-Sea in Somerset 20 years ago.
“I’m fighting to stay alive every single day of my life and am in constant pain.
“I’ve lost eight kilos (1.25 stone) in the last few months alone, have to take 50 pills a day and have to be tube fed at night as I’m burning so many calories as my heart rate is so high.
“At the moment, Spanish doctors won’t do anything to help me. They will only keep me stable.
“But Orkambi, which is legal in the US, is a drug that has been proven to boost lung function by thinning mucus.
on-the-catwalk-at-a-charity-fashion-show“I’d love to try it, as would lots of other people I know here.”
She has teamed up with charity Fibrosis Quística Málaga to push for its legalisation.
“We’ve been campaigning to get it legalised for the past year and yes it’s expensive costing €120,000 per patient per year…. but when you consider that some people who are using it now don’t need to take their other medication or stay in hospital it’s not bad.”
Spanish doctors recently refused to give Becky a lung transplant, which had been her main hope of survival.
“It’s because I have amyloidosis as well,” said Becky.
having-her-port-put-in-though-which-all-her-ivs-are-dripped-into-her“They said that even if I had a kidney transplant too the condition would return and would damage my other organs, including my new lungs.
“If there was a chance that I could get more treatment or a transplant in the UK I would go back but the weather there is really bad for my lungs and I don’t think I would be here now if I’d stayed.
“If anyone knows of any other treatment that may help I would love to hear from them as I am feeling very down at the moment.”
Becky, who has a campaigning website called See Off CF Spain, hopes to launch a fundraiser for research into more cystic fibrosis cures.
To get in touch with Becky to find out how to help, go to www.seeoffcfspain.com

Chloe Glover (Reporter)

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