BY ASHLEY THOMPSON
The Hants Journal
At 31, Julie Veinot is wishing for a medical breakthrough that, for her, would mean the difference between living and existing.
Right now, she's existing.
And, most days, it takes almost everything the mother of two can bear to continue.
Veinot is surprisingly cheery for a person battling a rare liver disease that is so painful it has rendered her in the past to temporary states of paralysis.
"No one wants to be around someone who is crabby all the time," the soft-spoken Garlands Crossing resident said during an Oct. 5 interview.
When she experiences what doctors believe to be Porphyria attacks, she is bed-ridden with severe abdominal pains, migraines, throbbing hands and legs, fatigue and extreme nausea.
"I lost 60 pounds in one month from all the vomiting," she said.
"Last year I was at the point where I literally wanted to die. The pain and the vomiting was so bad."
Veinot became symptomatic of Porphyria at 19. In the last two years, the attacks have grown to be excruciating.
"I get severe, severe abdominal pain - like I've had two babies and I'd rather have 10 (more) than go through this," Veinot said.
"It's like being disembowelled alive."
Nova Scotia doctors suspect Veinot is suffering from one of eight forms of Porphyria, but she has yet to find a medical expert in Canada who can determine which type she has and develop a treatment plan to make living with the incurable disease more tolerable by lessening the severity, and frequency, of the attacks.
"I'm not really enjoying my life right now," Veinot confessed.
"I want to get to the point where I'm able to enjoy it and not be sick so much."
A better life costs a pretty penny
Veinot is on a strict gluten-free, dairy-free, carbohydrate diet to suppress the attacks, which can be triggered by stress, hormones, consuming forbidden foods and fasting for more than three hours
"Sometimes I wake up at night severely nauseous and I have to get up and eat something. One of the toughest things I've done in life is to have to eat when I'm nauseated. It's absolutely horrible."
She is in the Hants Community Hospital about once every two weeks when the pain gets to be so agonizing she has to be hooked up to a sugar IV to lessen the affects of the attacks.
Veinot takes roughly 20 different medications daily. She can no longer drive, and has been forced to bid farewell to career aspirations.
"I can't work anymore and I was a veterinary assistant. My dream was always to be a veterinarian and I got through my first year of pre-veterinary school and I just couldn't do anymore."
Veinot has travelled to Toronto in pursuit of answers to improve life for a mother who is barely well enough to spend quality time with her children, and a wife who yearns to take some weight off her husband's shoulders. She returned home feeling guilty for wasting what little money the low-income family has on a trip that yielded no results.
But Veinot's not throwing in the towel. By scouring the Internet, she found a glimmer of hope in New York City.
The Mount Sinai Genetic Testing Laboratory in New York offers DNA testing that could get Veinot on the road to wellness - if she comes up with the money to pay for the procedure.
"They'll be able to tell me for sure that I have the disease, what type of Porphyria I have... and, hopefully, get me on a plan to live a better life."
Out of fear of triggering an attack, Veinot avoids flying. To have her blood examined by genetic specialists in New York, she is hoping to fundraise $500 to cover the cost of shipping blood drawn in Halifax to the Mount Sinai Genetic Testing Laboratory overnight, and $2,000 to pay for the DNA testing.
Raising awareness for others
Veinot's main source of information about Porphyria is the Internet. She has found no support groups for individuals suffering from the genetic disorder in Nova Scotia, and she feels many medical professionals she deals with know little about the disease.
"I think it's important for people to know how much suffering I go through even though I'm young. I don't think many people know what it is and what it's like to live with it."
Porphyria cannot be cured by a liver transplant; a transplant is considered as a last resort to prolong a patient's life for a few years.
The American Porphyria Foundation's website has a list of medications Porphyria patients should avoid that can prove to be fatal if consumed.
Veinot said she is lucky to have a strong support group at home. In joining a Porphyria group on Facebook, she has learned this isn't the case for many individuals with the genetic disorder.
"People are battling alone and it's really sad."
Veinot hopes more medical professionals will start researching the disease, learn how to to provide patients with fast relief from the attacks and strive to find a cure.
"It's heartbreaking. My children have a 50 per cent chance of getting it because of the genes," she said.
It’s like being disembowelled alive. - Julie Veinot
"I hope and pray that if my kids get this that they don't have to suffer the way that I have."
Settling for a new normal
Jiah Veinot admires his wife's courage. The full-time call centre employee commutes to Lower Sackville for work five days a week to keep their mortgage paid and support his family of four and the two rescue pets his wife adores.
He takes comfort in knowing his parents or his wife's parents will commute from Bridgewater on the days he works to help with the kids. He takes pride in knowing the woman he married will do her utmost to make others feel good while she's in extreme pain.
"Julie is an inspiration, with how positive she's been... I think sometimes if I was going through that situation I'd just say, ‘Lord take me home now,' " he said.
"It makes me realize I made the right choice when I asked her to marry me and she was crazy enough to say yes."
The disease limits the amount of time his wife can spend doing the lightest of household chores and playing with her children, but he said she won't let herself stay down in the dumps for long.
His wife concurs. There is no shortage of love in her life.
"I try to remain positive for my kids because I want my kids to learn that even though you can't always control what comes into your life, you can control your attitude, you can control how you treat others," she said.
It can be particularly challenging to stay positive when her six-year-old son questions her mortality.
"He'll say, ‘Mommy if you go to heaven, I want to go with you.' I just sit and cry because... it's really tough and what do you say?"
She may not always have the answers for her kid's questions, but she always has a supportive right-hand man to guide her through her darkest hours.
"He makes me feel loved when I feel completely unlovable."
To learn more about upcoming fundraisers for Julie Veinot or to get in contact with the family, email: jjveinot@eastlink.ca. For more information about Porphyria visit the American Porphyria Foundation's website at www.porphyriafoundation.com.
