WHO?
Darice Jamison (Col ’91) is an advocate for arthritis research. Her eldest son, Zach, was diagnosed with juvenile arthritis.
When people think about arthritis, they often think of it as an old person’s disease—certainly not something that affects children. Unfortunately, that is a misconception; in fact, juvenile arthritis (JA) is one of the most common childhood diseases, affecting nearly 300,000 children in the United States. I never thought about how arthritis affected children until my son was diagnosed with multiple epiphyseal dysplasia (MED) when he was just 6 years old.
Zach at a NASCAR event with investor Evander Holyfield, where Zach represented the 350,000 children with arthritis as a new car was unveiled with the “Kids Get Arthritis Too” logo on the hood.
Our journey started when I first noticed my son, Zach, walking oddly. His gait looked as if he had spent all day riding a horse. When I asked why, he simply said that his legs hurt. Our first trip to the doctor’s office resulted in a diagnosis of growing pains. He was young and growing fast, so at first we dismissed the problem. Then, the pain became worse. Our son, whose greatest passion was baseball, was struggling to run the bases, stopped going outside to play with his friends after school and began to have difficulty walking. As the mother of this very energetic and athletic boy, I found this hard to fathom.
Because JA can be very difficult to diagnose, many children go months—even years—living in pain with no known cause. For Zach, it took 10 months, a dedicated pediatrician and numerous referrals to various specialists to get a diagnosis. Many of the specialists had no answers for us, and one even asked us if it was possible that all of the pain was in Zach’s head. With little information to go on, my husband and I began to wonder if Zach had bone cancer, so at first, we were relieved to learn our son just had a form of JA. We were naïve about the challenging journey that lay ahead.
Scott and Darice Jamison with their children Liza, Zach and Patrick.
We could not imagine when he was diagnosed the agony we would experience watching our child in ever-increasing pain. We suffer from the knowledge that there is little we can do to help. We could not foresee the emotional impact it would have on all of us when Zach had to quit playing the sports he loved and redirect his energies to competitive swimming. Now he has had to give that up, too. We did not realize the social impact it would have on him in fifth grade, when girls began teasing him, or in middle school, when all his friends bonded through team sports and Zach was the only one unable to play. We did not realize how chronic pain would affect Zach’s ability to concentrate on his schoolwork or the impact it would have on our other two children. We did not realize the financial impact it would have on our family, as we must travel from Georgia to Rhode Island for treatment from a doctor with experience dealing with children with bone diseases like MED. I wish I could say that our experience was rare, but when I speak to other parents of children with arthritis, their stories are similar.
At first, there seemed to be so little that we could do, but then we found the Arthritis Foundation. Through the foundation, Zach was able to meet other children who have arthritis, initially through a camp especially for kids with arthritis. Then over the years, he met more friends through various programs for children and their families. These programs and experiences provide Zach with a chance to feel normal. The foundation has helped the whole family to better understand and manage Zach’s condition and form bonds with families who understand just what we’re going through.
By working with the foundation, we have taken control of what little we can with this disease. Our family began advocacy efforts, working to raise awareness and funding for research toward a cure. Zach, at 11 years old, began speaking to large groups on behalf of children with arthritis.
Zach Jamison speaking to a crowd at an Arthritis Foundation event.
When I attended U.Va., I never imagined that my degree in biology and concentration in marketing would become so important, not just to my career but also to my son. I did not realize that I would come to use the knowledge and skills I acquired while at the University to advocate for my son’s care with doctors, the insurance company and his school.
You can imagine the excitement and enthusiasm I felt when I learned that the Arthritis Foundation was providing a research grant to Dr. Loren Erickson, assistant professor of microbiology with the Beirne Carter Center for Immunology at U.Va., to study the biological mechanisms that lead to the generation of arthritis. If Erickson and his team of students can identify what contributes to the breakdown of the immune system that results in arthritis and many other rheumatological disorders, then his team may be able to determine the origin and progression of the disease. This could lead to new treatments that could intervene in the progression of the disease and potentially restore the immune system to normal working order. Their research has lead to analysis of the B-cells, or antibodies, in the blood.
With more than 46 million people living with the pain of arthritis, Erickson’s research has the potential to impact millions of them.
While our family continues our advocacy, awareness and fundraising efforts passionately, my son looks forward to the day that he can walk across Grounds without pain, as a U.Va. student, maybe even studying under Erickson.
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Comments
Thank you for the article Darice. I admire you & your family for the stand that you are taking with this disease and of course the support to Zach. As a body, we can do a much.
Thank you Darice. Your son, Zach, is an incredible person with an incredible family. My mother died at 51 with RA. It was heartbreaking to see her suffer. I am forwarding your article to all of my family and friends.
I worked with Jan at AT&T. Pls give her a hug for me ! !
Thank you to both of you for your encouraging words!
Struggling to find help for my 12year old granddaughter who has recently been diagnosed with JRA.
Michelle, Where do you live? My first step would be to contact the Arthritis Foundation Chapter in your area. They have been a tremendous resource for me. They can connect her with other children with JRA and connect you and/or her parents with other parents. This helps a great deal, sharing lessons learned!
Darice,
Out of my own research, I discovered a couple of websites that you need to review that will help your son’s journey. Please visit both http://www.rhuematic.org and http://www.roadback.org and I feel very strongly that you will find information that will help him too. Best of luck.
Hi Darice,
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I am glad to see y’all online and getting support. The Researching for many, Many years has taught me alot. Bio and Genetic we never can learn to much about. We do have more Websites which are Great to research and get to know more Parent’s of JRA Kid’s. Keep up the great work. I will always be involved with Kid’s Get Arthritis Too. Melissa will never outgrown JRA but there may be a Cure one day. Email me anytime for more info
Robbin
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