National Post (National Edition)
SPECIAL REPORT INSIDE: DEMAND FOR PATIENT-CENTRIC HEALTH CARE
Robbie Murray, now 14, remembers Grade 1 as a time clouded by pain. “It’s a long time ago,” he says. “But I remember being very tired and not having the energy to do anything. I had almost constant stomach pain and I wasn’t hungry at all, so I was losing a lot of weight.”
“He was wasting away,” says Kate Murray, his mother. “In between running to the washroom a lot, laying down on the couch in the classroom was the only thing that made him feel better.”
Soon, Robbie was too sick to go to school. His mother, frantic because there was nothing she could do to take away his pain, asked their family physician for a referral to a pediatric specialist.
“That was the moment when things changed,” she says. “Finally, someone took Robbie’s symptoms seriously.”
Eventually, after being admitted to SickKids Hospital in Toronto and undergoing numerous medical tests, Robbie was diagnosed with Crohn’s disease. “Now we had a name for this beast that had been ravaging my son,” says Murray.
Physicians assured her that with a treatment plan that’s right for him, the disease could be managed. “After trying multiple drug treatments, he was slipping back into a flare-up,” Murray recalls. “Robbie was bedridden and completely withdrawn socially for months. He wouldn’t even come downstairs to eat, because eating caused him so much pain.”
Eventually, Robbie’s health-care team found a treatment to which his Crohn’s responded successfully. “That therapy made all the difference,” Murray says. “After five or six treatments, our boy was back with us. He was eating with us again and he started interacting with friends.”
“It felt like a long time finding the treatment that was going to help me, but when they finally found the one that worked, it was a big relief,” says Robbie.
Like Robbie, Ryan Nesbitt, 22, has had Crohn’s disease since he was very young. It took from the time he was four until he was 17 to find the one medication that worked for him and continues to keep him stable.
Nesbitt, a filmmaker who recently graduated from Toronto’s Ryerson University, worked with Crohn’s and Colitis Canada to create a documentary about inflammatory bowel disease.
“It’s a lighthearted film presented in layman’s language as a conversation,” he explains. “It is half-animated to make it more fun. The idea is to raise awareness of the disease and to get more people to understand what’s going on. The more people who know, the better.”
“After going through so much, it would be terrible to go off the one that works,” says Nesbitt, when asked about his changing therapies.
Seeking stable relief sooner for young patients is one of the chief goals of the Foundation for Children with Intestinal and Liver Disorders (CH.I.L.D), according to Mary Parsons, president and chief executive officer. “In partnership with the Canadian Institutes of Health Research (CIHR),” she says, “CH.I.L.D has established a network that has changed the landscape of research in Canada.”
“Children with Crohn’s disease are usually started on one protocol and, if that doesn’t work, they go on to another one and so on,” she says. “Now, through the work of the Canadian Children Inflammatory Bowel Disease Network: A Joint Partnership of CIHR and CH.I.L.D. Foundation, a biopsy can be taken from child A, and what is called a gut ball made in the lab. Medications are tried on it. Basically, you can now work in the lab and not on the child.”
Crohn’s and Colitis Canada emphasizes the importance of research to help the 250,000 people in Canada with inflammatory bowel disease.
“Our mission is to find cures and improve the quality of life for the people living with these diseases and the whole circle of families and friends who are affected,” says Angie Specic, vicepresident, marketing and communications.
“Often, it is a significant amount of time before patients reach the point of stability,” she adds. “So having access to the right treatment for them is extremely important. This is why we advocate for improved coverage.”
Today, Robbie is fighting for other children suffering from Crohn’s and ulcerative colitis at the same time as he prepares for high school.
In an attempt to ensure all families touched by these diseases get the support they need, the Murrays set up Robbie’s Rainbow. With this, Robbie began a journey toward helping others while looking for the stability and normalcy that all kids his age enjoy.
There are many options in the treatment of autoimmune diseases. All treatments have benefits and risks, some of which can be serious, and can vary by individual.
If you are living with Crohn’s disease or ulcerative colitis, talk to your doctor about treatment options that might be right for you.
Just like Robbie, it’s important for all patients to take charge and stay in control of their treatment.
OUR MISSION IS TO FIND CURES AND IMPROVE THE QUALITY OF LIFE