This Juvenile Arthritis Awareness Month a Winnipeg mom is sharing her son’s journey with juvenile arthritis. Diagnosis is rarely straightforward and there are multiple misconceptions about arthritis in children. Although the learning curve is steep when your child receives a diagnosis, there are resources available. This is Conor and Nicole’s story, from diagnosis to finding support and learning to live with the disease.
Conor was 8 when he came home from school complaining of a sore foot. His mom thought his shoes were too tight and bought him a new pair, but the pain didn’t go away. Eventually, she took him to a sports medicine clinic. When they couldn’t see anything wrong, they assumed his injury was a hairline fracture and put a cast on his foot.
But the foot eventually came out of the cast looking way worse than when Conor had started. It was swollen, purple and his pain kept getting worse.
Nicole and her son persisted in seeking answers. Eventually a blood test revealed an abnormality. The family worried about cancer and indeed that was also investigated. When a diagnosis of juvenile arthritis came back, they were shocked.
“I remember feeling almost relieved when we found out it was arthritis,” said Nicole.
But at the same time the family had a perception of arthritis being an older person’s disease. And they didn’t know all the side effects and systems that can be impacted. There are several different types of arthritis. Conor has ankylosing spondylitis, a type of arthritis that affects the spine and sacroiliac joints. It is an autoimmune disease which means the body attacks healthy tissue.
“Arthritis is not just creaky joints.”
Children and teenagers can be affected by a variety of forms of arthritis, all of which can have potentially devastating effects on developing bodies. Age of onset for Conor’s type of arthritis is typically a good deal older than Conor is. Conor’s mom knows of only one other child with the same form of arthritis in Manitoba.
March is Juvenile Arthritis Awareness Month – an opportunity to help bring awareness to a condition many stigmatize and consider an “older persons” disease. Juvenile arthritis is a chronic autoimmune disease. The juvenile part is just as it sounds – arthritis impacting children.
From the foot pain incident to diagnosis, the time frame was about nine months. Nicole, who also owned her own brewery at the time, set out to find all the educational resources she could. She quickly connected with The Arthritis Society, calling it an amazing asset. Additionally, she hunted down Facebook groups, and other online groups to learn more.
Conor is now ten years old and in grade five. He has hearing problems and is being tested for Crohn’s Disease, an autoimmune inflammatory bowel disease, now as well. He struggles with chronic pain. The year of his diagnosis he missed over 100 days of school. But, as Nicole notes, school is not just about academics and although he managed to stay on top of his grades, she worried about all the social interactions he was missing. Now that he is on medication that works, this year has been much better attendance-wise.
Nicole notes that the invisible nature of this disease means others can’t see the pain and fatigue. But you have to trust your child. There are days when Conor calls from school and he simply needs to come home and rest.
For Conor’s family this diagnosis has been hard and emotionally draining. But they have also chosen to approach it together as a unit, and they have made several lifestyle changes to help Conor succeed and thrive.
Nicole says the entire family has adopted a healthier lifestyle. She sold her brewery and paused her MBA studies. As a mom of a child with a chronic illness she must be on top of managing his health care needs. That can be almost a full-time job on its own.
“Knowledge is power and that was a big deal. To be present in his heath care was a huge thing for me. I spend a large chunk of my day managing his health care.”
“He’s doing well in school. but he needs to know this is the new normal.”
Nicole’s advice for other parents
Humour is a huge source of strength for the family and it helps them to get through the hard days.
Nicole also searches out the silver linings in the situation at hand, saying the entire family has become his advocates. I couldn’t be prouder of my older son. At 13 he’s been an amazing brother and champion for Conor too.
Looking to social media and Instagram helped her see how others cope with a disease. “Use it or lose it” is a common theme she says. Meaning keep striving to use the joints that are affected as much as possible.
“We all have something. We all have an issue, an obstacle or a roadblock. That doesn’t mean you can’t have a wonderful life.”
A few more things about Juvenile Arthritis Awareness Month:
- Arthritis is one of the more common disorders resulting in chronic disability in children and teens in Canada.
- About 3 in 1,000 children have arthritis.
- There is no single test that can diagnose childhood arthritis.
- For more information and resources, check out The Arthritis Society website: http://bit.ly/2F6GiMz
This post has been sponsored which means I received compensation. My opinion is all my own and it is also truthful.