12 Truths People Affected by Juvenile Arthritis Wish Others Understood


According to the Arthritis National Research Foundation, arthritis is the leading cause of disability in America. That means an estimated 50 million Americans, including about 300,000 children, deal with the pain of arthritis on a daily basis. It’s by no means an “old person’s disease.”

Although the number of young people with arthritis is so high, the condition is littered with misconceptions. So we partnered with the Arthritis National Research Foundation to raise awareness about JA. We asked our communities what they wish the rest of the world understood about JA. Here’s what they had to say:

1. “It’s a battle that comes with its own set of dragons and other obstacles, and sometimes you will be down and out for a while. But that doesn’t mean you have to give up on your dreams.” – Victoria Steed

2. “I was 18 months old when I was diagnosed. It was a hard childhood, however, it made me the resilient determined powerfully positive well rounded person that I am today. JA is a horrible thing, but life doesn’t end, and don’t ever let anyone tell you that you cannot do something!” – Danielle Lindoff

3. “You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.” — Carrie Folkerts 

You don’t have to put limitations on us. We are aware of our physical limitations. We are just like you, so please don’t treat us differently.

4. It’s not just achy joints; it’s doctor visits, missed school days and missed special events. Our kids still have to put up with bullying at times for having what is known as an ‘old person’s disease.’” – Gaby Baldenegro

5. “I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.”  – Katherine Herrmann 

I am not my disease. I am not the medication, the canceled plans, or the wheelchair. I’m not the swollen joints or even the pain. I’m a survivor. What you don’t see is my fight to appear normal every single day. So please stop looking at my arthritis to define me.

6. “I think the hardest part as a parent is hearing him wish for ‘one day without pain.’” – Andrea Thompson

7. “Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.” – Becca Duane

Children are stronger than you think, and sometimes they are hiding some of the pain. It’s easier to hide and ignore the pain than to address it.

8. “It’s not just aches and pains! It is an autoimmune disease and can affect your skin, eyes, heart, lungs, and neck near the spinal cord.” – Courtney Smith Cooley

9. “Watching your child’s body turn on itself, and then watching them have to go through such grown up things like monthly blood draws, injections, pills and more pills, is completely heart wrenching.” – Jessica Ferguson Garcie

10. “Even though you look normal on the outside and try to keep up and do things with everyone else, you may be dying in pain on the inside.” — Linda Syrko-Shapach

11. “I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.” — Megan Vanellope Mueller 

  1. I was diagnosed at 18 months and I am 30 years old now. Kids, keep your head up, it gets better. Plus, your friends will love you for who you are, your disease doesn’t control you.

12. “I was diagnosed at 8 years old and I turned 40 this year. I want everyone to understand how amazing these kids are and how much daily life can be a struggle. These kids are some of the toughest and most resilient kids. People should take the time to get to know them and learn about their journey.” — Cat Hicks

What are some things you wish others understood about living with  juvenile arthritis? Let us know in the comments.

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