Fields not lakes.
Kaftrio, the new treatment for CF, has been in the news again and is undoubtedly the best thing to come out of 2020 in my eyes. Today the Observer detailed the funny year that CF patients have had; on the one hand COVID was expected to be a huge threat to all with chronic illnesses, but this hasn’t proven to be true in CF. Mostly, I expect, because COVID turned out to be so ageist, and CF sufferers are mostly young. But also because the CF community is well versed in infection control already, mask wearing, avoiding the ill, being uber clean, and seeking medical help as soon as symptoms progress. I read blogs, watch vlogs and speak to friends who have been able to try Kaftrio often, and it never ceases to amaze me. An oral drug, that can treat the underlying cause of CF (the CFTR mutation affects the movement of water and salt in and out of cells) - it really is incredible science. And the results have gone far beyond what many dreamed of; children and young people with end-stage CF are being removed from the transplant list, no longer needing new lungs from a generous stranger. In many cases, quality of life has increased dramatically. Children who take this drug may never have the inflamed, scarred and damaged lungs that Isaac has now. Families may avoid the pain, the stress, and the heavy burden of treatments that has been the norm for others all this time.
The lesser spotted teen, on camera!
Friends contact us when reading these stories... excited as we are in these exciting developments. However, Kaftrio will never work for Isaac. It’s not that it needs a slight tweak to make it work for his specific mutation, he needs a whole new recipe. To understand why, you can read more about his rare mutation here. That said, the success of these new drugs fills us with hope, and while we know it’s going to take a while (years, not months) we think that one day we will able to access a clinical trial for something that will work for him, and the other 10% of CF patients who are still waiting.
Right now, Isaac’s lungs are struggling. Lung function dropping, cough increasing. We’re waiting to make a plan with his team as to our next steps, hoping above all to stay away from hospital, as they struggle with rising cases of new variant COVID patients in this tier 4 area.
Christmas Day Bellini breakfast
I will be walking 500km over the darkest month of January, and some wonderful friends and family will be pledging their own active challenges in the theme of 500 to support my fundraising further. There is no Christmas break from Cystic Fibrosis, and more than ever, charities need your donations. To read more, and sponsor us, please click here.
Keep well x
Obie, the most handsome dog
