It was the summer of 2020 when 46-year-old Shirley Antonelli began feeling fatigued.
The Port Hardy resident had swelling in her feet and hands, her lips would go purple and the skin on her hands and neck would become tight.
She saw many doctors but made little progress finding out what was wrong.
“I really felt like the system was failing me,” said Antonelli.
It it took until March 2021 for Antonelli to be diagnosed with a rare disease called scleroderma — which is known for being difficult to treat.
“So what’s happening is my lungs are producing fibres so that my lungs are turning to stone,” she told CHEK News via Zoom from her Port Hardy home Tuesday.
Shirley is now on oxygen 24/7 and the simplest of tasks are exhausting due to scleroderma’s effect on her immune system.
She will likely need a lung transplant, but in the meantime she’s been trying to get BC Pharmacare to cover an expensive drug called Rituximab that will slow the progression of the disease.
She applied for a Pharmacare Special Authority request in October but it was not approved.
Shirley and her husband were getting increasingly worried about how long it was taking to hear back after applying again.
“The timely manner it takes to get an answer is life-threatening for Shirley for sure because she’s having episodes that are happening more and more quicker and quicker and they’re actually getting worse,” said her husband Joseph Antonelli.
CHEK News contacted the Ministry of Health Tuesday to inquire about her application and before CHEK News recieved a response, Shirley got the call she had been waiting for.
“I got a call at two o’clock from Pharmacare to let me know that my prescription for Rituximab has been approved,” she said late Tuesday afternoon.
“I’m really happy for her and I thank you guys for making the call,” added Joseph.
Shirley is now waiting to hear what hospital she’ll have to go to for the IV infusion of the drug but is eager to start the first step toward healing from scleroderma.