Claire is our next spotlight and her diagnosis story is a little different. Claire was not diagnosed until she was 8 years old. Unfortunately her records were lost at birth by her GP, including her heel prick test for CF. She endured 8 years of infections before she was tested again for CF and then got news that she indeed had Cystic Fibrosis.
Claire is now 31 years old from Central Otago, New Zealand. She loves the mountains and the sea, so she enjoys anything that will take her there. She’s a mountain biker, hiker or tramper as they call it in New Zealand. She’s a snowboarder and the occasional surfer.
She has a 6 year old mutt that is able to join in on adventures! The love of the outdoors led her to her profession in fruit research, helping to develop new varieties of fruits.
As with most with CF a daily routine is a must, as well as inhaled therapies and physio. For Physio she uses a combination of autogenic drainage breathing techniques with acapella and exercise. She says she is lucky to be pancreatic sufficient, however she suffers from DIOS, pancreatitis and suspected gastroparesis which means she has to deal with a raft of other GI treatments. Depending on wellness, she completes a course of IV medications every 3-4 months to try and keep on top of the different bacteria that grow in her lungs.
In New Zealand they do not have access to CF modulator therapies, after 7 years of lobbying, Kalydeco has gone through funding for around 30 people with specific mutations. She is looking at ways to get access to Symdeko, but she fears it won’t happen in her lifetime. She currently sits at just above 30% FEV1, and is starting conversations with the transplant team, because she doesn’t have another 7 years to wait for Symdeko to be approved.
“For us here in New Zealand, gaining access to new modulators that are funded in most other OECD countries is our top priority. We are very lucky to live in a wonderful country, but we are well behind the rest of the world in terms of access to medication for many disorders. We have only a public healthcare system, and therefore no possibility of private funding of these medications. Knowing that there is potential for reversal of the situation I find myself in, but not being able to afford the medications to do so, is emotionally very taxing.”
This is why our research is so important. Now only for our kids and those in America but people around the world that suffer from CF. The sooner we find a cure for CF the sooner people like Clair will have access to the medication and opportunity for a cure.
To help find a CURE and help those like Claire CLICK HERE!