“It’s such a hard road. It’s like being on a roller coaster and not being able to get off and it just keeps going downhill.”
That’s how Julie Veinotsums upher life with porphyria.
“I’m starting to lose hope because every single call from the doctor is just more bad news,” she said.
The rare liver disease shows no mercy forher 32-year-old body. The mother of two rarely sees a day when she is not battling shooting pains in her abdomen and muscles, unremitting nausea or severe fatigue.
“It’s just relentless. There’s no taking a break from your body and it’s so hard to explain to other people how you feel,” the Garlands Crossing resident confided in a recent interview.
“If somebody had to live in my shoes for one day, they’d be begging for their body back.”
A much more optimistic Veinot first contacted the Hants Journal in October 2011 in hopes of sharing her story and receiving some feedback that may lead to a firm diagnosis or treatment plan that would lessen the severity of the symptoms of, what was believed to be, one of eight forms of porphyria.
At the time of the first interview, Veinot, who belongs to a family of four living off modest wages her husband earns as a full-time call centre employee, was struggling to save up $2,500 to have a blood sample sent to the Mount Sinai Genetic Testing Laboratory in New York for DNA testing.
When news broke of her struggle, the owner of the nearby Swinamer’s Home Building Centre, Brian MacDonald, offered to pay for the blood test, and several people sent donations to help with mounting medication costs.
Veinot, who has a four-year-old daughter and seven-year-old son, thought her quality of life would drastically improve once the blood sample was tested. She imagined it would lead to a diagnosis, top-notch treatment and a better life.
She was wrong.
The blood sample sent to New York tested negative for porphyria. Veinot says local doctors told her the test may have missed something in her DNA, and offered a diagnosis of query porphyria.
She has been unable to find a specialist in Nova Scotia to develop a treatment plan that will minimize the severity of the attacks, which often leave her bed-ridden in excruciating pain, or too exhausted to complete what once seemed like the simplest tasks.
“Right now having a shower is a workout.”
Veinot says it costs $700 to $800 a month to stock up on the 21 medications doctors prescribed for the porphyria attacks and recently discovered thyroid complications.
“If somebody had to live in my shoes for one day, they’d be begging for their body back.” - Julie Veinot
“It’s awful, there’s just so many times I just don’t want to be here.”
Veinot is working on a request she hopes Kings-Hants MP Scott Brison will present to the federal Minister of Health on her behalf. In scouring the Internet to learn how people living with porphyrias cope with the incurable disease,she learned many have found an American drug called Hematin provides consistent pain relief.
The hitch, Veinot says, is she simply can’t afford Hematin.
“It’s $1,000 a week for an IV. So, I’m just praying that the government steps in to help because, financially, we just can’t do it.”
She wants the federal government to arrange for her have a trial period with the drug.
“It’s pretty scary when you’re 32 and you’re told your organs are starting to show signs of aging. I’m at the point now, and this is sad to say, I think I’ve switched bodies with a 70 year old.”
She says it is crucial her request is seriously considered, as time is of the essence.
“I’m looking at potentially leaving a husband and two children behind,” she said, her voice shaking. “And, it’s hard.”
Veinot, a former veterinary assistant who is no longer able to work, says the entire family suffers along with her. Their house is not as clean as it once was, their cupboards are not nearly as full and their lives aren’t quite as carefree.
A group of locals recently joined forces to gather stocking stuffers and gifts for Veinot to put out for her children Christmas Day. She says the kind gesture means more than those people probably know, as it comes at a crucial time in her children’s lives.
“They’re definitely seeing more than I wish they had to deal with in their small lives.”
Those wishing to get in touch with Julie Veinot are invited to email email@example.com.
To learn more about porphyria, visit www.porphyriafoundation.com.