How This 20-Year-Old Is Challenging Society’s View of the Terminally Ill
Patient Perspective Imagine living with a disease where every breath you take feels like drowning. Unfortunately, for many people suffering from cystic fibrosis, it’s a daily reality.
Cystic fibrosis (CF) is a progressive, terminal disease that results when a child inherits two defective CF-causing genes (one from each parent). For a child to have CF, both parents must be carriers, and among Canadians, one in every 25 people carry the genetically deficient gene.
In Canada, cystic fibrosis is the most common terminal genetic disease affecting children and young adults. Sadly, there is no cure. While sufferers experience a variety of symptoms, malnutrition, difficulty breathing, and lung infections are among the most debilitating.
But these devastating symptoms don’t slow down Claire Wineland. Diagnosed with cystic fibrosis as a baby, she wasn’t expected to live beyond the age of 10. Now at 20, she’s already had 35 operations, including being placed in a medically induced coma when her lungs failed at the age of 13. Then, she was only given a one percent chance of survival — but Claire seems to have a talent for beating the odds.
The terminally optimistic young American has chosen humour over hopelessness, and has made it her life’s goal to normalize sickness and challenge how society views those living with chronic illnesses.
“People who are sick tend to be treated unfairly,” says Claire. “There’s this notion that the lives of those who are ill are somehow less than those of healthy people. People seem to think that someone who is sick is living a kind of sad half-life and they need to be saved.”
Yet Claire points out that rather than focus on what a sick person may lack, the emphasis should be on the things they can offer that healthy people can’t. “I believe that people with a disease often have something to live for that others don’t. Sick people know how precious things are; in a way, those who suffer have the most to give.”
Claire is certainly not waiting for someone to save her. She is too busy saving the world. She feels that a person’s illness can be a reason to do more with life — not less — and to this end she has spearheaded two major campaigns.
The Clairity Project is a YouTube channel designed to educate people about cystic fibrosis. Claire’s Place Foundation, founded when she was 13, is a non-profit organization that provides support to families affected by cystic fibrosis.
“It’s because of my illness that I started the foundation. I’ve learned that the best stuff we can give the world comes from the difficulties we go through. So I’m not going to focus on dying. I’m going to focus on the good things I can give.” And there’s no doubt that Claire still has a great deal to give.