Cystic fibrosis influences many individuals in Scotland, and around the world. The disease is a progressive, genetic disease where long-lasting lung infections hinder the ability to breathe over time. This happens when mucus clogs the airways and traps in germs, which can help lead to inflammation, infections, and respiratory failure.
There is no cure for cystic fibrosis, however, treatments are available which can help reduce the symptoms, and improve the quality of life – leading to a happier, and longer life. However, at times with treatments such as these, there can be delays or waitlists such as the one that an Aberdeenshire woman had to endure.
Hailey Mann, 25, had been living day to day with feeling like there was no purpose in life after getting hit with a delay to a cystic fibrosis drug is now living her best life.
She’d been informed that she needed to make peace and come to terms with her days coming to an end due to her condition worsening.
However, when the medication was at long last approved for her she said there were “tears of joy,” as she began the treatment last year. The beauty specialists said her life had been changed and she was currently living her best life.
Hailey said that at the time an agreement had been made with the pharmaceutical organization which produces Kaftrio to make the medication accessible to her on empathetic grounds. The licensing of the medication in Scotland had been delayed by the covid pandemic, yet was then approved for use.
Hailey told BBC Scotland: “It’s been a rollercoaster year, however a vastly improved one than I was on previously. It’s a finished 360. How much energy, how much things I’m doing – before Kaftrio I was simply existing rather than living. Presently I’m living. It’s an entirely unexpected life,” she noted. “I feel like I’ve been allowed a second opportunity at life.”
Hailey said she attempts to do something new every day and take full advantage of everything “because you don’t know what’s around the corner”.
She explained: “Even with the pandemic I’ve been able to do so much more in this last year. The difference is unreal.”
This is great news that may have not been a right-away answer but seems it would have been a more readily available one. Simply because it seems as though there is no set waiting time for the treatment, nor is there a straightforward queuing system. Lungs along with other donor organs are required to be biologically matched to the person with cystic fibrosis. Some individuals may wait a matter of years before finding a match for organ transplants, and sadly some wind up dying on the waiting list.
Ms. Mann says she’s kept in contact with a transplant group and that they were elated with her progress, with her lung work going up and balancing out.
“So they’re simply keeping me on their radar so in the event that there was to at any point be any issues, they know who I am and where I’m at, however until further notice I’m content with where I am,” she said. “Just to attempt to live regular like it’s your last. I’m expecting to go to Mexico with the family. That is our definitive getaway destination.”
This story syndicated with permission from My Faith News
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