Yesli Paillacan lives in Victoria, Chile, where she studies agriculture at Arturo Prat University. The 19-year-old has not decided yet where she wants to work after graduation, but with a promising future ahead of her, the world is Yesli’s oyster. It wasn’t always that way, though.
Yesli grew up in Araucanía, Chile’s poorest region in terms of gross domestic product per capita, where 80 percent of the population depends on the public health system, and where hospitals and health centers are often separated by long distances. For a child growing up with a rare disease, Yesli’s life was filled with hardship and uncertainty.
She was born with a rare primary immunodeficiency disease that consistently disrupted her and her family’s life. Yesli was repeatedly hospitalized in Temuco, almost 40 miles from her home, due to pneumonia. She also struggled with bronchiectasis and underwent pulmonary resection surgery.
At first her doctors told Yesli’s family that her frequent illnesses were caused by asthma or an allergy. When she was 3, Yesli was diagnosed with hyper immunoglobulin (Ig) syndrome and referred to her local health center, which should have changed the course of her care and her health. Unfortunately, the doctors there did not understand the severity of her disorder and failed to correctly treat it. Yesli continued to have bouts of severe pneumonia.
Today, she remembers feeling sad all the time as a child.
“I couldn’t go out to play in the fields with my friends because I was often sick,” she says wistfully. “I was coughing all the time and sometimes I couldn’t breathe. It was very upsetting not knowing what was wrong with me.”
Yesli continued to suffer with one illness after another, causing some doctors to say it was in her head.
The threat of frequent hospitalizations dramatically affected Yesli’s quality of life. She could not attend school regularly, particularly in the winter, when weather conditions exacerbated her condition. Adding to her hardship, there was no transportation to school and her family didn’t have a car.
“My grandfather would walk me to school,” Yesli says. “I was absent so much it was hard to keep up with schoolwork. Thankfully, my schoolmates helped me.”
Yesli says she would be okay for a month and then spend the next four in the hospital. She once had to be hospitalized for six months.
“It was very frustrating,” she says. “We needed to find out what was wrong with me, and not just for my sake.”
Yesli’s chronic illness was also taking a toll on her grandparents who were raising her. The trip to the hospital in Temuco took two hours. Her grandparents sold some of their livestock to buy a car so they could drive her rather than rely on the bus.
“My grandparents are my true parents because they raised me,” Yesli says. “They made sacrifices to make sure I would get better. They sold many of their belongings to help me. I thought I needed to get better because that would make them better too.”
Yesli’s pediatric immunologist, Dr. Ana María Vinet at Dr. Hernan Henriquez Aravena Hospital in Temuco, said the shortage of funding in Chile for treatment and care made Yesli’s journey to good health even more problematic.
“In Chile the burden is on the patient community and the hospital to raise funds for medical care,” Vinet says.
Yesli was eventually able to obtain money for intravenous (IV) Ig treatment. She says her life got significantly better when she began receiving IVIg. “It was a very big change,” she notes. “I didn’t get sick anymore. Mostly it was the peace of mind and tranquility that we all felt. It changed our lives completely, not having to worry all the time.”
For the first time, Yesli was enjoying a greater level of normalcy than she had ever known. Little did she know things would get even better. But not before adulthood brought on yet another challenge.
“There was a shortage of bedding and facilities for adult patients, and no place to receive IVIg, which is only administered in a hospital,” Vinet recalls.
Determined to let no patient go untreated, Vinet looked for a way to enable Yesli and two other adult patients to continue receiving their needed medicine. Using funds from her pediatric budget, she treated Yesli and the other two adult patients.
Last year an even more dramatic improvement took place when Yesli began using subcutaneous Ig.
“It’s convenient,” she says. “I just come to Temuco to pick up the medicine and I can administer it myself.”
For patients who travel long distances to be administered IVIg, the ability to dose in one’s home is transformational from a travel perspective.
There is an obvious bond between patient and doctor that has grown over the years.
“I’ve known Yesli since she was 3,” Vinet says. “I’m proud of her and how she’s become more and more independent and how she’s grown as a person.”
Yesli says she’s grateful for the personal support as well as medical care she received from her doctor.
“When I was afraid to go to the hospital, she helped me get past my fear by letting me know everything was going to be alright.”
While Yesli’s story has a happy ending, according to Vinet it is still difficult to find specialists in Chile who understand rare diseases such as primary immunodeficiency.
“It has never been more important for the medical and patient communities to raise their voices,” she says.
Pediatric immunologist Dr. Ana María Vinet makes her rounds at Dr. Hernan Henriquez Aravena Hospital in Temuco, Chile. She says it is still difficult to find specialists who understand rare diseases in Chile.
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