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A Long Journey with JRA

A mother looks back on the 40 years since her daughter’s juvenile rheumatoid arthritis diagnosis.

By Dawn Hafeli

I remember it well, asking my sister if her baby (who was just 4 months ahead of mine) ever limped when she got him up in the morning or after a nap. And I commented on how odd it seemed that my baby, Melissa, would fall asleep in her highchair in the morning, seemingly too tired to finish a small meal. And sometimes that small meal was only a few Cheerios, since her appetite seemed to be smaller than other children’s, too.

Those are my memories of how arthritis started in my daughter, who was about 10 months old at the time. Many pediatrician visits followed as symptoms confounded us, moving swiftly along a pathway of more limping, crying when getting shoes or a sweater on, dark circles under her eyes, and finally the telltale swelling in tiny hands and feet and what appeared to be limited joint range of motion for one so young.

Finally, after she spent three weeks in the hospital, ruling out many other diseases, we got the answer: juvenile rheumatoid arthritis (now classified as juvenile idiopathic arthritis) in a severe flare state. Lucky for us, we quickly got a referral to a pediatric rheumatology clinic at the University of Michigan. Within a short time, our tiny daughter had cock-up splints on her wrists, a casted splint on her right elbow and both knees, and intense physical therapy to bring back range of motion in her hips. The long journey had begun.

Getting strong for the long haul. Before long, I found myself becoming an advocate for Melissa’s welfare. She had juvenile rheumatoid arthritis (JRA), but it was not going to “have” her. My husband Dennis and I searched for all there was to learn about this unknown disease (we’re talking about 40 years ago now), we pursued the best care, we asked questions and sought out answers, and we created a world where our family would be as normal as possible. We would not let JRA get the best of us – though there were times it came close!

Revolutions in treatment. Forty years ago, the only drug available for a young child with JRA was baby aspirin – lots of it. Prednisone, still used today to calm a flare, back then was the only alternative if aspirin wasn’t doing the job. Imagine that! Today, there is a doctor’s black bag full of choices. Nonsteroidal anti-inflammatory drugs (NSAIDs) came out when Melissa was eight years into her poorly controlled JRA. She was one of the first to use methotrexate, as part of a study at the University of Michigan clinic. At that point, she was beginning middle school and needed a wheelchair. Methotrexate worked remarkably well, and today has become standard care. When the first biologic drug Enbrel, became available in 1998, Melissa got right on it. Still, all of these advances came late for Melissa. By then she was a special education teacher in Nashville and facing surgical interventions to keep her walking.   

That was then and this is now. Today, visitors to one of the Arthritis Foundation’s juvenile arthritis camps or the Arthritis Foundation Juvenile Arthritis Conference would not see many “Melissas” there. They would see kids who take a large number of medications, but the advantages of having those medications available are seen in how fairly mobile and energetic most kids are. Nevertheless, this disease still needs to be taken very seriously. It can and will have serious consequences if left too long undiagnosed and/or treated inappropriately. And there will always be those who do not respond well to the best of treatments.

An advocate was born. I know exactly when I became an advocate for Melissa in school. I was sitting across from the director of special education, hearing him tell me that he didn’t think they could take Melissa into the preschool program that our son had attended, but that they could put her on a bus and send her to an orthopedic program in another district. I knew that was not what we wanted and that it wasn’t the right answer. And so an advocate I became. I have never given up that role. It meant figuring out a way for Melissa to receive physical and occupational therapy in school, take gym class, go to the 6th grade winter camp, learn to drive when her friends were doing so at age 16, and accompany her high school Spanish class on a trip to Spain.

My unplanned career. The Arthritis Foundation has played an incredibly important role in this journey. In 1978 three activist moms (I’m one of them) came together through the Arthritis Foundation to learn and make the world a better place for kids with arthritis. We met with staff at the National Office in Atlanta and discussed what we thought was needed and how the Foundation could help. In 1981, the official JA leadership group, now known as the JA Alliance, was approved and on its way. JA educational materials for parents and kids were developed, programs and manuals were written, support for research and specialty clinics happened.

When I retired from my “arthritis career” in 2010, I had clocked 35 years as a volunteer, activist and staff. I helped launch the very first AF Juvenile Arthritis Conference in 1984, developed local programs and activities, and served as “Head Bear” at Camp Dakota, the Arthritis Foundation’s juvenile arthritis camp in Michigan.

Over these decades, I know that I have played a role in helping thousands of children and their families find the knowledge and support they need to deal with juvenile arthritis.

Some final thoughts: We are all faced with a series of great opportunities – brilliantly disguised as what might appear to be unsolvable problems. Courage and confidence help you step up. I think of all that Melissa has dealt with in growing up with arthritis. Melissa is OK, though OK is defined differently than how I expected it to be. But I am happy in the thought that today, the world is a better place for children with arthritis as they grow, learn, imagine, dream and do.

7.24.14

 

 

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A Long Journey with JRA

A mother looks back on the 40 years since her daughter’s juvenile rheumatoid arthritis diagnosis.

By Dawn Hafeli


I remember it well, asking my sister if her baby (who was just 4 months ahead of mine) ever limped when she got him up in the morning or after a nap. And I commented on how odd it seemed that my baby, Melissa, would fall asleep in her highchair in the morning, seemingly too tired to finish a small meal. And sometimes that small meal was only a few Cheerios, since her appetite seemed to be smaller than other children’s, too.

Those are my memories of how arthritis started in my daughter, who was about 10 months old at the time. Many pediatrician visits followed as symptoms confounded us, moving swiftly along a pathway of more limping, crying when getting shoes or a sweater on, dark circles under her eyes, and finally the telltale swelling in tiny hands and feet and what appeared to be limited joint range of motion for one so young.

Finally, after she spent three weeks in the hospital, ruling out many other diseases, we got the answer: juvenile rheumatoid arthritis (now classified as juvenile idiopathic arthritis) in a severe flare state. Lucky for us, we quickly got a referral to a pediatric rheumatology clinic at the University of Michigan. Within a short time, our tiny daughter had cock-up splints on her wrists, a casted splint on her right elbow and both knees, and intense physical therapy to bring back range of motion in her hips. The long journey had begun.

Getting strong for the long haul. Before long, I found myself becoming an advocate for Melissa’s welfare. She had juvenile rheumatoid arthritis (JRA), but it was not going to “have” her. My husband Dennis and I searched for all there was to learn about this unknown disease (we’re talking about 40 years ago now), we pursued the best care, we asked questions and sought out answers, and we created a world where our family would be as normal as possible. We would not let JRA get the best of us – though there were times it came close!

Revolutions in treatment. Forty years ago, the only drug available for a young child with JRA was baby aspirin – lots of it. Prednisone, still used today to calm a flare, back then was the only alternative if aspirin wasn’t doing the job. Imagine that! Today, there is a doctor’s black bag full of choices. Nonsteroidal anti-inflammatory drugs (NSAIDs) came out when Melissa was eight years into her poorly controlled JRA. She was one of the first to use methotrexate, as part of a study at the University of Michigan clinic. At that point, she was beginning middle school and needed a wheelchair. Methotrexate worked remarkably well, and today has become standard care. When the first biologic drug Enbrel, became available in 1998, Melissa got right on it. Still, all of these advances came late for Melissa. By then she was a special education teacher in Nashville and facing surgical interventions to keep her walking.   

That was then and this is now. Today, visitors to one of the Arthritis Foundation’s juvenile arthritis camps or the Arthritis Foundation Juvenile Arthritis Conference would not see many “Melissas” there. They would see kids who take a large number of medications, but the advantages of having those medications available are seen in how fairly mobile and energetic most kids are. Nevertheless, this disease still needs to be taken very seriously. It can and will have serious consequences if left too long undiagnosed and/or treated inappropriately. And there will always be those who do not respond well to the best of treatments.

An advocate was born. I know exactly when I became an advocate for Melissa in school. I was sitting across from the director of special education, hearing him tell me that he didn’t think they could take Melissa into the preschool program that our son had attended, but that they could put her on a bus and send her to an orthopedic program in another district. I knew that was not what we wanted and that it wasn’t the right answer. And so an advocate I became. I have never given up that role. It meant figuring out a way for Melissa to receive physical and occupational therapy in school, take gym class, go to the 6th grade winter camp, learn to drive when her friends were doing so at age 16, and accompany her high school Spanish class on a trip to Spain.

My unplanned career. The Arthritis Foundation has played an incredibly important role in this journey. In 1978 three activist moms (I’m one of them) came together through the Arthritis Foundation to learn and make the world a better place for kids with arthritis. We met with staff at the National Office in Atlanta and discussed what we thought was needed and how the Foundation could help. In 1981, the official JA leadership group, now known as the JA Alliance, was approved and on its way. JA educational materials for parents and kids were developed, programs and manuals were written, support for research and specialty clinics happened.

When I retired from my “arthritis career” in 2010, I had clocked 35 years as a volunteer, activist and staff. I helped launch the very first AF Juvenile Arthritis Conference in 1984, developed local programs and activities, and served as “Head Bear” at Camp Dakota, the Arthritis Foundation’s juvenile arthritis camp in Michigan.

Over these decades, I know that I have played a role in helping thousands of children and their families find the knowledge and support they need to deal with juvenile arthritis.

Some final thoughts: We are all faced with a series of great opportunities – brilliantly disguised as what might appear to be unsolvable problems. Courage and confidence help you step up. I think of all that Melissa has dealt with in growing up with arthritis. Melissa is OK, though OK is defined differently than how I expected it to be. But I am happy in the thought that today, the world is a better place for children with arthritis as they grow, learn, imagine, dream and do.

7.24.14