Four out of five children in Grafton family have juvenile arthritisGRAFTON, N.D. — The family of Brian and Ranell Hanson is helping the most respected researchers in the nation find a cure for juvenile arthritis.
By: Pamela Knudson, Forum Communications, INFORUM
GRAFTON, N.D. — The family of Brian and Ranell Hanson is helping the most respected researchers in the nation find a cure for juvenile arthritis.
Four of the couple’s five children have the disease. It is thought that genetics may be a factor in its cause.
Medical records and blood samples from all seven members of the family have been sent by Altru Health System in Grand Forks to Cincinnati Children’s Hospital Medical Center in Ohio for use in ongoing studies.
The family became involved because the children’s pediatric rheumatologist, Dr. Thomas Mason of Mayo Clinic in Rochester, Minn., “was puzzled by (the disease) popping up with all the kids,” said Ranell.
On behalf of his colleague at Cincinnati Children’s Hospital, Mason asked the Hansons if they’d be willing to be part of the study there.
“We were done having children, so it wouldn’t affect us at all. But when they,” she gestured to her kids, “start having children, maybe it’s something that would lead to, I’d love to say, a cure.”
Researchers are looking closely at genetic factors in the incidence of juvenile arthritis, Ranell said. “To get mine and Brian’s blood — who neither of us have it — we thought it would be really, really helpful.”
The Hansons’ pediatrician, Dr. Eric Lunn, who’s also chief medical executive at Altru Health System, supervised the collection and transfer of materials to Cincinnati Children’s.
The hospital receives the second-most National Institutes Health funding of any pediatric institution in the United States. It is ranked third among all Honor Roll hospitals in the 2011 U.S. News and World Report survey of best children’s hospitals.
Lunn was not surprised by the family’s willingness to participate.
“People around here understand that medical education and research are important,” Lunn said. “I often have medical students with me (in clinic). My patients are used to it — the support has always been here.”
Other than her children, there’s no evidence of juvenile arthritis in Ranell’s family, she said. Her husband has an older relative with adult onset arthritis, an illness that’s distinct from juvenile arthritis.
“My second child was the first to get it,” Ranell said. Paige was 2 at the time.
Ranell remembers when she and Brian saw the first signs of juvenile arthritis in Paige, now 16. “She would stand at the top of the stairs and just cry,” she said. Despite encouragement, she wouldn’t descend.
“My husband said, ‘Come and look at her knees.’ They were huge,” she said. “It was winter-time. I hadn’t noticed her knees. I was busy breastfeeding two premature twin babies.”
Because early symptoms of leukemia and juvenile arthritis are similar, Ranell and Brian were “almost thankful” when they learned Paige had juvenile arthritis, she said.
The children say the disease has especially affected their participation in sports, primarily because of pain to their joints.
It’s bad “when you’ve been running a lot,” said Paige, “and the pain afterwards.”
Stephanie, 20, a sophomore at Concordia College in Moorhead, said, “You feel a step slower than everyone else.”
The youngest, Cole, 13, deals with stiffness in the morning and difficulty flexing his hands, his mother said. He was forced to drop out of his school’s football program recently because of his symptoms, but not without a fight. “He’d go all through the practice, but I had to carry him off the football field to the truck after practice,” Brian said.
Every week, Brian injects Cole with a medication to combat the joint swelling.
Cole and his sisters also take pills to control the pain, and undergo blood testing every three months.
Cole “looks sick a lot, he’s so slender. But he’s coping the best he can,” Ranell said. “He doesn’t know what it’s like to not have pain.”
Only Jillian, who with Jaden is a twin, 14, does not have JA but has been told she could contract it. She doesn’t let it bother her.
“I don’t think about it,” Jillian said.
The three Hanson girls who have JA have a type called pauciarticulate, Ranell said. It affects their knees and ankles. With this type, fewer than four joints are affected.
In Cole, the disease affected only his knees and ankles until one-and-a-half years ago when it moved to his feet, elbows and fingers. He has a type of JA called polyarticulate.
Mason told the family the migration of the disease to more joints is very unusual, she said. “It only happens in 10 percent of children” with JA.
Ranell appreciates his approach to managing juvenile arthritis.
“I like that he doesn’t keep kids on drugs any longer than needed,” she said.
While the powerful pharmaceuticals are effective, they are worrisome to parents.
“The side effects of medications are hard to see,” she said. “Watching the disease limit what children can do is hard to see.”
One of the medications prescribed for juvenile arthritis, Enbrel, presents a risk of lymphoma or other cancers.
“I think about that every day, Ranell said. “And yet, there’s no other option. We have to get the disease under control.”
At one point, when Cole’s use of Enbrel was cut back, “he just perked up.”
The Hansons choose to view their situation from a wider angle.
When they go to Mayo for medical appointments, “you see kids who are in real tough shape,” Brian said. He takes comfort in the fact that his children don’t have a worse illness.
“They’re still able to partake — not to the full extent — but there’s medication to help them. It’s a bother, but it’s something they can cope with.”
As a parent, “you wish every day you could take it away,” he said. “But if they can live a 90 percent normal life, I’m grateful for that.”
“It’s heartbreaking to not see your child be able to run, to see your child hurting, not only physically but in their spirit,” Ranell said.
“When I start to feel bad about it, I think, it could be worse, we can manage it. It’s not life threatening.”