Top left: Kim doing a dose of intravenous antibiotics at the beach. [Image courtesy of Kim Wood] Top right: Katrina on silks [image courtesy of Katrina]
Cystic Fibrosis (CF) is a genetic disease which causes progressive damage to lungs, among other issues. As medical understanding of and treatments for CF advanced, the current population of adults with CF became the first to survive into adulthood. Most of us were raised with the understanding that we wouldn’t be around for very long. We made our life plans accordingly, and then we outlived our plans one by one.
I have named this unique, unprecedented and unrepeatable era in the timeline of CF:
The Therapeutic Cusp
Genetic modulators are the latest medical advance in CF treatments, and have dramatically changed the shape of the therapeutic cusp. They treat the cause rather than the symptoms for 90% of cases of CF. For those of us who can take them, for the first time in our lives our life expectancies no longer loom within sight.
How do you live a life you’ve never seen, and weren’t expecting? In traversing the therapeutic cusp, our lives are unmapped, under-represented, and ultimately unknowable. The aim of this project is to create understanding and representation of life in the therapeutic cusp.
People with CF are advised not to meet each other in person, in order to avoid the risk of cross infection from the unique combination of pathogens in each of our lungs. These pathogens are only a risk to damaged CF lungs, and do not affect people with healthy lungs. The only safe means of interaction, support, and friendship within the CF community is connecting online.
Developments in remote communication technology have shaped the social aspect of life in the therapeutic cusp. Remote communication allows the CF community safe contact with one another, as well as giving us access to the outside world during hospital inpatient stays.
Most people with CF require semi-regular stays in hospital for two or more weeks at a time. The Covid-19 pandemic propelled the adoption of remote access, allowing us to continue to participate in work and education during hospital admissions for the first time ever. In removing societal barriers that it had seemed our illness placed in our way, the pandemic restrictions helped to advance the social side of life in the therapeutic cusp.
“When I was going to university, I was fighting nurses, fighting doctors to let me go to school and then at school I'm fighting teachers, fighting you know, the executives to let me still go to school and hospital at the same time. Now everyone is online and everyone has the option of not going to class. Like where was that?”
Katrina
“I came up for a one year contract and 25 years later, I’m still here. I didn’t plan for any of this life because I wasn’t supposed to be here”
Richard