Juvenile Arthritis Awareness Month – Conor’s Story
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.
What a brave kid Conor is! I can’t imagine having to deal with that at his age, so thank you for bringing awareness to this.
If friend of mine has a daughter that is going through the beginning’s of something that looks like it’s going to be chronic. It is not arthritis but it is still blowing her world way up and she is having a hard time dealing with it. I think this is a post that my friend needs to read. I think it would help her to help her daughter.
For a time my oldest daughter was being investigated for this. She had an ankle that was hurting for easily over a year. I am hoping that her doctor was accurate when he finally decided he didn’t think it was arthritis. The thing is there’s no definitive test and it can be so hard to tell with kids. They are vague about describing pain sometimes.
WOW, it’s heartbreaking to hear whenever anyone is in pain. For a child to know what chronic pain is like, and knows that this will be their normal brings tears to my eyes. It sounds like he has a long journey ahead of him health-wise, but YAY for the medical community discovering what Connor is facing. Sometimes just knowing what is happening can help in relief, especially when the pain is a chronic condition. Wishing all the best to him!
And thanks for describing the actual physical conditions that happened with his foot. I had no idea that arthritis could actually present visual symptoms. I hope I’ll never have to use this knowledge, but I’ll keep it in mind should any of the young ones in my life start describing mystery pains.
It really is Aeryn! I agree. I hate hearing about kids coping with chronic or acute pain or a disease that really impacts their daily life. Kids should simply have the chance to be kids and do all the things children are supposed to be doing in that stage of life. What I like about the story here is that the Mom is still able to find many positives in the new normal.
valmg @ Mom Knows It All
I remember when one of the neighbor’s children was diagnosed with juvenile rheumatoid arthritis. She had a lot of problems, fortunately it seems like it hasn’t been flaring up for quite a while now.
We have friends who have a daughter that has this jdisease. She has been through so much. Good you are making people aware of this
What a brave child! I’ll be honest I had no idea this was even an issue for kids. I didn’t know it effected them! Very interesting to learn.
I’ve seen firsthand the devastation arthritis can do to an adult. I can’t imagine what Conor went through
Little Miss Kate
oh I have watched my Aunt suffer with arthritis, I can’t even imagine how hard it would be for a child. I know the Arthritis Society is a great resource, and helps support research in the area.
I must confess, I don’t know about this disease and I am so glad I came over this post. I am one of the person who gain awareness from your post. Good thing you were able to share this. I am sure many people are like me who are clueless about this and its about time to create awareness like this.
Oh my, I didn’t know much about this so I’m glad I read your post. I am glad people are speaking openly about this so it can help kids going through it.
“Invisible” disease is the worst! Sooooo frequently overlooked by medical professionals who should know better and almost always misdiagnosed a few times before getting to the real issue.
I have been through this with my daughter and it’s not invisible, it’s just that doctors can’t figure it out in a visit here or there.
They need to see the child day in and day out, live with them, and know the child in the best and worst of times,
ONLY parents can do this so doctors need to listen to us carefully and not dismiss what we say.
How terrifying to have a child go through that! I know a few people with arthritis as adults and that is brutal to deal with, I can only imagine how difficult that is for kids to deal with. Bringing awareness to the symptoms is so important.
This is really a great awareness because I didn’t even know that juvenile arthritis exist. That’s gotta be tough for little ones to suffer from that.
Tasheena @ SimplyTasheena.com
I had no idea that 3 in 1,000 children have arthritis. It’s very scary that a child could go through this. I’ve learned so much from your post. Thanks for sharing!
Juvenile Arthritis is a horrible disease! These poor children break my heart. Thank you for this information.
This is one of those articles that really makes you stop and consider. My youngest often complains about sore feet and I brush it off but I will definitely be paying closer attention next time.
I know someone who has this. It is seriously the worst thing ever!
Hey, thanks for sharing this info. I’d heard of juvenile arthritis before, but I did’t know anything about it. I’ll definitely be more aware of this if my kids experience unexplained pain. So glad Conor’s family was able to get that diagnosis and treatment for him!
As an adult dealing with rheumatoid arthritis pain, I can’t even imagine a poor child dealing with this. It’s so sad, no child should have to deal with juvenile arthritis!
I remember a classmate at school having this and she would be in awful pain some days, it was a shame as she loved to dance and it held her back in many ways.
This is the first time I heard about Juvenile Arthritis. I can’t imagine that some kids have gone through this pain. Conor’s story is an eye opener for parents like us.
I had a friend in school who had juvenile diabetes. It would get bad and she’d miss a lot of school and then she’d spend a year being homeschooled and then come back to school. I felt bad for her.
Breaks my heart to hear of little children suffering! My niece was diagnosed with juvenile arthritis and even though she had a really tough time with it, she was a little trooper. Thank you for bringing awareness to this illness!
Thanks for commenting Monica. It is hard to watch anyone suffer in pain but when it’s a child that’s even harder. What I love about this story is the positive approach that MOM takes.