Danielle MacDonald is looking for a way to help her daughter fight a rare condition named eosinophilic cystitis.
It's a rare inflammatory condition where one type of white blood cells attacks the bladder. It is extremely painful and can cause frequent urination.
Faith Bigam turned 22 last week, and says she’s lucky to have made it to this age. She’s been in and out of hospitals since she was two years old. She was diagnosed with Kawasaki Disease at two, Juvenile Rheumatoid Arthritis at four, and Multiple Sclerosis at 12.
“Almost two years ago, I was having problems with my bladder and kidneys. It's been pretty extreme to the point where, on and off, I haven't been able to work and I've been in the hospital, so many times with acute kidney damage and kidney failure,” said Bigam.
She was diagnosed with a rare illness called eosinophilic cystitis which impacts the bladder and as a result the kidneys as well. Right now, Bigam is reliant on steroids to calm the inflammation in her bladder “just enough to function,” says MacDonald.
There’s a medication, Mepoluzimaub, which has shown success in two other patients with similar symptoms. It comes with a steep price tag and no payment help available.
“The problem is that the company will not provide compassionate care, pharmacare has refused multiple applications of special approval to cover the medication and it is not covered by insurance,” said MacDonald.
“This means in order for Faith to have access to one of the only medications that could possibly help, we will have to figure out paying for it, it is $36,000 a year.”
Waiting for next flare up, hoping for help
Without the medication Bigam says it’ll be a “ticking time bomb” waiting for her next flare up.
“I had acute kidney failure and, due to that, ended up having heart problems and lung problems, and every time I've gone to the hospital [it has been] worse than the last,” said Bigam.
“It is an autoimmune disease… so eosinophilic are a white blood cell. When those spike or are irritated or inflamed… the first thing they do is go after my bladder, and start causing severe damage to it which, when that happens, that then sends the damage up into my kidneys.”
She’s been in and out of acute kidney failure and kidney damage about six times. It’s gotten to the point where Bigam will need to have her bladder removed and be reliant on a bag instead if she cannot access the medication.
Bigam says there’s no doctors in Canada who know how to treat the illness. She has a team of doctors in Kelowna she says are “amazing” and conducting research to better help her.
“We drive from Lavington to Kelowna hospital seven days a week as she requires IV treatment on a tapered schedule which will go on for months at a time depending on how she responds to them,” said MacDonald.
The condition itself was first reported in 1960, according to the National Library of Medicine, only 200 cases have been reported in literature since then.
The family has started a GoFundMe to help cover the cost of Bigam’s medication and other medical care. They say it’s the last chance to give Bigam the opportunity to get her life back.
