Kourtney Kujawa is forced to hunch over when she walks these days. Her fingers have blistered so badly that the subsequent scarring has transformed her hands into a club-shape. It takes four hours every other day to apply bandages to more than 90 per cent of her body.

Due to a rare and extremely painful genetic disorder, the 19-year-old woman from Fraser Valley, B.C. is almost entirely dependent on others for help with everyday tasks.

“I can't get dressed by myself, go to the washroom, I can't do my own hair or anything like that. I need a lot of assistance," Kourtney told CTV Vancouver on Wednesday.

Kourtney suffers from epidermolysis bullosa, a condition which causes her skin to blister easily and fall off. The wounds left behind can create scars that lead to contractures, a shortening of a non-bony tissue that has deformed Kourtney’s hands. Contractures on her hips have made it difficult for her to stand up straight as well.

“She gets blisters inside her esophagus. She's had blisters on her cornea, all over her whole body,” Kourtney’s mother Janelle said.

Up until now, Kourtney has been receiving 267 hours of care from a nursing aide every month under B.C.’s Ministry of Children and Family Development coverage.

But ever since she turned 19 years old last fall, the young woman’s coverage has been drastically cut. Kourtney is now only eligible for 167 hours of assistance every month, a reduction that has put a strain on her parents who have been struggling to juggle full-time jobs with their daughter’s care.

Kourtney’s parents have now been tasked with the four-hour job of applying dressings to her body every other day and taking her to a wound specialist every week.

"It's been really hard," Kourtney said as her voice trembled. "I haven't been able to do the things I've wanted to do, including school, and it's been very hard on me… and my family too."

When the Kujawa family reached out to B.C. Fraser Health Authority about Kourtney’s coverage, they were told they would just have to figure out a new way to apply her bandages to save time. The young woman said she was surprised the health authority had the “audacity” to respond in such a way.

Janelle claimed that when the family asked Fraser Health if they even knew what epidermolysis bullosa was, they responded that they had “no idea.”

In an emailed statement to CTV News, Fraser Health spokesperson Tasleem Juma said they were working with Kourtney’s family to support her transition from youth to adult care. Juma said the young woman’s case will be reviewed by the province’s Choices in Supports for Independent Living.

"Our client is receiving the maximum amount of support for her current needs under the guidelines,” Juma wrote. “We have committed to providing a reassessment of her needs and should these have changed, we will ensure she receives the appropriate level of care.”

In the meantime, Kourtney is holding on to the hope that she will one day be able to fulfill her dream of attending college to become a counsellor.

"I'd just love to live independently on my own one day and have a job to go to," Kourtney said. "To help other people, because I've been through so much."

With a report from CTV Vancouver’s Michele Brunoro