Every two years, a letter from the Gastroenterology unit drops into Maria’s mailbox. It is a call to attend her regular surveillance colonoscopy to check for potential precancerous polyps which are very likely to grow in Maria’s colon. Maria has Lynch Syndrome, an inherited genetic mutation in one of the mismatch repair genes (MLH1, MSH2, MSH6 and PMS2) that significantly …
Tag Archives: Chronicity
Running on Borrowed Life
On a cold January afternoon in 2018, 18-year-old Sara locates me in the crowd at the train station. Together we take the bus to her home in a small village in rural Denmark. Sara tells me that she is excited to be training for her driver’s license. However, she is worried that her application for the license will be scrutinized …
Chronic living against all odds in Honduras
Yesenia was born with congenital heart disease in 2000, a time in Honduras when heart defects meant certain, if not sudden, death for most children. Owing to surgical advances dating back to the 1950s, most children in more resourced countries could by then be diagnosed and treated in a timely manner, significantly improving their chances of long-term survival. In Honduras, …
Pains, pleasures, and a new electric wheelchair
A Wednesday in May 2017, Vienna, Austria
The door opens. Behind it is Frau Schöbel, a tiny woman in her early seventies.[1] Through her glasses, her eyes are piercing. Her lipstick is impeccable and matched to the scarf tied around her neck.
Frau Schöbel is one of the people I met on the dialysis unit at the City hospital …
The ‘chronic’ lives of failing organs: afflictions of ambivalent care in Mexico
Life has always been difficult, Maria del Rosario told me, but she coped. That was before all the sickness. When her mother’s kidneys began to fail, she felt traumatised, utterly overwhelmed. No matter what she or anyone else did to help, it was no good. Their lives simply fell apart.[i]
Maria, a single mother of two, lived in Balcones …
Chronic Experimentation
The introduction of effective combination antiretroviral therapy for HIV disease in 1996 was commonly narrated as a major event that transformed HIV from an inevitable death sentence into a ‘chronic manageable illness’ – at least for those populations in wealthier countries granted socially and economically affordable access to the new treatments, not to mention the relevant clinical infrastructures to monitor …