MacKenzie’s Story
After a diagnosis of juvenile rheumatoid arthritis at age 8, MacKenzie worked hard to not let her disease prevent her from just being a kid and achieving her goals.
MacKenzie Meyer is 19 years old and has been living with juvenile rheumatoid arthritis (JRA) since she was 8. While her symptoms were worrisome – swollen ankles and wrists, a full-body rash and high fever – it took nearly a year to find a doctor who could help. Finally, while visiting the University of Minnesota Children’s Hospital, she was diagnosed with rheumatoid arthritis.
After years of trial and error, MacKenzie’s arthritis is now under control “I am thankful every day for the health care team that has been by my side since day one,” she says.
The biggest obstacle MacKenzie faced as a child living with JRA was just being a normal kid. She knew it wasn’t normal to take a shot every week or to travel to Minneapolis every month for appointments. She wanted the normalcy her friends all experienced, and she wanted to be able to participate in everything they did. MacKenzie decided that no matter her situation, she wouldn’t let her disease to stop her.
Her advice to newly diagnosed families is that things get better. “When the arthritis is not under control, it is a lot to deal with,” she says. “It seems like the disease is the only thing that defines your life. Once the arthritis is under control, you find out what works best for you. Just remember that there are families out there that are going through the exact same thing, and that no one is alone when fighting this disease.”
MacKenzie’s hope for arthritis is that it will be diagnosed earlier in people, rather than letting it progress and cause damage. Since many hospitals do not have pediatric rheumatologists, kids wait for months or years to be seen. Many even have to travel hundreds of miles for an appointment. North Dakota just welcomed their first pediatric rheumatologist, but there is still a long way to go for families to get the resources they need for the diagnosis of arthritis.
After years of trial and error, MacKenzie’s arthritis is now under control “I am thankful every day for the health care team that has been by my side since day one,” she says.
The biggest obstacle MacKenzie faced as a child living with JRA was just being a normal kid. She knew it wasn’t normal to take a shot every week or to travel to Minneapolis every month for appointments. She wanted the normalcy her friends all experienced, and she wanted to be able to participate in everything they did. MacKenzie decided that no matter her situation, she wouldn’t let her disease to stop her.
Her advice to newly diagnosed families is that things get better. “When the arthritis is not under control, it is a lot to deal with,” she says. “It seems like the disease is the only thing that defines your life. Once the arthritis is under control, you find out what works best for you. Just remember that there are families out there that are going through the exact same thing, and that no one is alone when fighting this disease.”
MacKenzie’s hope for arthritis is that it will be diagnosed earlier in people, rather than letting it progress and cause damage. Since many hospitals do not have pediatric rheumatologists, kids wait for months or years to be seen. Many even have to travel hundreds of miles for an appointment. North Dakota just welcomed their first pediatric rheumatologist, but there is still a long way to go for families to get the resources they need for the diagnosis of arthritis.