The Power of Connection
Read one mom’s powerful story about the importance of resources and connection to navigate her family’s arthritis journey.
Arthritis can be a lonely journey, and even more so when you’re the parent of a child with arthritis. Finding resources and a support team to connect with can make all the difference.
Corinne’s daughter Emily was 2 years old when she was diagnosed with juvenile arthritis (JA). Like the parents of hundreds of thousands of kids diagnosed with JA, their journey started with doctor’s appointments, lab work and various medicines.
“Despite everything, she was a pretty healthy, happy kid,” says Corinne. “We were just trying to make life as normal as possible for a child. The family dynamic was that we just did what we had to do. We just gave her the medicine. We didn't try to limit her in any way.”
When Emily was 5, Corinne was looking for a family-friendly event they could do together and connected with the Arthritis Foundation through a Jingle Bell Run. From there, she reached out to the local Houston office and they attended various JA family days. Corinne’s first introduction to the Arthritis Foundation’s JA Family Summit was through a friendship with fellow JA mom Abby Brown.
“I evolved in getting involved,” Corinne says. Her friendship with Abby evolved into attending a CARRA (Childhood Arthritis and Rheumatology Research Alliance) conference, connecting with the national Arthritis Foundation JA team, meeting other JA parents, developing kids’ programming and ultimately volunteering to chair the 2023 JA Family Summit.
Corinne’s daughter Emily was 2 years old when she was diagnosed with juvenile arthritis (JA). Like the parents of hundreds of thousands of kids diagnosed with JA, their journey started with doctor’s appointments, lab work and various medicines.
“Despite everything, she was a pretty healthy, happy kid,” says Corinne. “We were just trying to make life as normal as possible for a child. The family dynamic was that we just did what we had to do. We just gave her the medicine. We didn't try to limit her in any way.”
When Emily was 5, Corinne was looking for a family-friendly event they could do together and connected with the Arthritis Foundation through a Jingle Bell Run. From there, she reached out to the local Houston office and they attended various JA family days. Corinne’s first introduction to the Arthritis Foundation’s JA Family Summit was through a friendship with fellow JA mom Abby Brown. “I evolved in getting involved,” Corinne says. Her friendship with Abby evolved into attending a CARRA (Childhood Arthritis and Rheumatology Research Alliance) conference, connecting with the national Arthritis Foundation JA team, meeting other JA parents, developing kids’ programming and ultimately volunteering to chair the 2023 JA Family Summit.
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Through it all, Corinne forged a strong connection with the community and the Arthritis Foundation’s JA resources and support.
“You really see the importance of why these conferences need to happen, why family days have to happen, why we have to have a support system, whether it's virtually or in person. It's a lot,” Corinne says. “It’s super important for us as adults to connect and get education for help for the future.”
She goes on to say, “We may not be physically around people to be connected, but we have a lot of friends around the country from those events. We’ve all gone through insurance issues or money issues or doctors, and you end up reaching out to your people to get through those times.”
Corinne leans on this support herself. A couple of years ago, Emily experienced a shift in her arthritis and was struggling with pain, mobility and anxiety. They were at a JA Family Summit and, as Corinne remembers, “It all blew up at the time, and she barely attended.”
The JA community was there to help, and Corinne ended up in a session where she realized the topic the presenter was talking about might help with Emily’s issues.
“I've always said to Emily, ‘You know, I don't want you to have arthritis, but I'm grateful you have it because we wouldn't have been connected. I wouldn't have had some of these experiences I've had over the years had it not been for your condition. Is it terrible sometimes? Absolutely. It's draining. It's terrible. It's exhausting. But there is the plus side to that: We’d never be in these spaces connecting with people like this.’”
“You really see the importance of why these conferences need to happen, why family days have to happen, why we have to have a support system, whether it's virtually or in person. It's a lot,” Corinne says. “It’s super important for us as adults to connect and get education for help for the future.”
She goes on to say, “We may not be physically around people to be connected, but we have a lot of friends around the country from those events. We’ve all gone through insurance issues or money issues or doctors, and you end up reaching out to your people to get through those times.”
Corinne leans on this support herself. A couple of years ago, Emily experienced a shift in her arthritis and was struggling with pain, mobility and anxiety. They were at a JA Family Summit and, as Corinne remembers, “It all blew up at the time, and she barely attended.”
The JA community was there to help, and Corinne ended up in a session where she realized the topic the presenter was talking about might help with Emily’s issues.
“I've always said to Emily, ‘You know, I don't want you to have arthritis, but I'm grateful you have it because we wouldn't have been connected. I wouldn't have had some of these experiences I've had over the years had it not been for your condition. Is it terrible sometimes? Absolutely. It's draining. It's terrible. It's exhausting. But there is the plus side to that: We’d never be in these spaces connecting with people like this.’”
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