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.
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 www.rhuematic.org and 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
Truly inspiring story. Zach is a remarkable kid! I have MED (diagnosed at 39!) and it appears my 5 year old son Will also has it. My late diagnosis means that the years of participating in sports teams probably haven’t done me any good (I continue to play quite competitive cricket to this day) but hopefully we can manage the condition in Will a bit better now we know. MED doesn’t mean the end of the world. I am struggling to find many support groups though, especially here in the UK. Any help anyone can give would be much appreciated.
As the mother of Darice, and the grandmother of Zach, it is very hard to watch the emotional pain that Darice, and her husband, experience watching their son suffer 24 hours a day, 7 days a week. As the grandmother, it rips my heart apart to see my grandson suffer such tremendous pain daily. It hurts me to know the pain he experiences emotionally because he can’t play sports; he can’t enjoy dancing; he can’t go hiking; he can’t do the things that young boys should be able to enjoy without suffering excruciating pain for days after if he attempts these fun experiences. This is an incredible family trying to do all they can to help Zach and other children with JA. Zach is a very brave and courageous young man who has lots of faith and continues the fight with smiles everyday! Thanks to UVA for sharing this story. Hopefully, this will help others who have children experiencing Multiple Epiphyseal Dysplaysia.
My Grandson Keir is 14 and was just diagnosed with Multiple Epiphyseal Dysplasia.We are all ver devistated with this news.His hip started to bother him and could not put any weight on it. MY DAUGHTER TOOK HIM FOR AN EXRAY AT THE IWK CHILDRENS HOSPITAL IN hALIFAX NS WHERE THEY LIVE. NOTHING SHOWED UP SO AN MRI WAS ORDERED AND THAT WAS WHEN THE MED WS DISCOVERED(sorry about the caps).he has been using crutches for a month and not putting any weight on it at all. the specialist he saw yesterday said for him to keep the crutches for 6 more weeks and that during that time he is to put a little weight on it evryday in the hopes that it will correct itself. the next step will be surgery if this doesn’t work.My heart aches for Keir and I would like to hear from others and how they are dealing with MED. Right now it is Keirs left hip that is being affected. Will all his joints eventually be affected
Mrs. Cadden, I know you are devastated. It is so painful to watch anyone suffer but especially your child or grandchild. My first concern is the diagnosis. As I understand it, Multiple Epiphyseal Dysplaysia means having the disease in more than one joint, such as two hips. Since you state that Keir is having pain in one hip, I wonder if he has Perthes. Perthes affects only one hip. In Baltimore, MD, there is a hospital, the Rubin Institute for Advanced Orthopedics, which deals with children from all over the world with Perthes. Dr. Standard is the doctor that you will want to see. Our grandson went to see Dr. Standard several times in the Spring of 2010. There is a surgery that Dr. Standard does for Perthes but there isn’t anything that they can do for our grandson because he has Multiple Epiphyseal Dysplasia. He has been told by many doctors that once he has completed his growing, they can do hip replacements for him (probably in his late 20’s to early 30’s) so in the meantime he suffers 24/7. If they perform hip replacements before then, it will likely affect his growth plates and stunt his growth! Our grandson was diagnosed between the ages of 6 and 7 years old. He turned 14 on September 4th. It is so sad to see our Zach suffer such horrible pain, and also, it is so sad to see him not be able to enjoy walking, running, playing sports, hiking, dancing at the school dances, proms and homecomings, etc. I pray that some day there will be something to relieve these children of their pain without having to give them the strong medications that they have to take in order to function. Please tell your daughter to NOT let anyone do surgery on your grandson until she has spoken with Dr. Standard. Multiple Epiphyseal Dysplasia nor Perthes goes away, so when the doctor tells your grandson to start putting weight back on his foot gradually, it doesn’t make sense. Our grandson finds that somedays the only way he can get around is on crutches, or in a wheelchair. The other days, he struggles with the pain and walks with a gait. I wish that I could give you words of encouragement to make you feel better. I pray that your grandson doesn’t have either of the diseases mentioned here but if he has to have one, I hope that it is Perthes because Dr. Standard can fix it! Our daughter, Zach’s mother, will also be contacting you in a few days.
The lady that told us about Dr. Standard is Sandi Foote. I don’t have her phone numbeer but I can give her any information that you would like me to forward to her. Her daughter had Perthes and was in a wheelchair for several years, then they found out about Dr. Standard at the Rubin Institute for Advanced Orthopedics. Dr. Standard did surgery on Sandi’s daughter and today her daughter is doing great! She runs, rides bikes, dances and models!
I will keep you, Keir and his family in my prayers.
Mrs. Cadden,
I see my mother’s comments to you, and I cannot agree with her more. I highly recommend you consider consulting a second opinion with Dr. Standard. He and his whole team are amazing. Some of the information that you share, makes me question if it is in fact MED vs. Legg Perthes. Dr. Standard has live chats on a weekly basis (varying week to week on his focus). You are able to e-mail X-rays, MRI images ahead of the chat and then ask him questions about the disease in general or his opinion. Based upon your discussion with him via chat, you may choose to schedule an appt. It is well worth the expense and trip. I don’t know where we would be without he and his colleagues. While my son’s MED will never be “healed” as Perthes can with proper treatment, Dr. Standard worked with us and referred us to his colleague, who completed 2 surgeries on our son that have significantly affected his pain level. Once on crutches nearly everyday for 9 months and having missed 57 days of school due to being sick from the pain, after the surgeries, he was on crutches just 18 days during the school year last year and missed only 8 days resulting from pain, significant improvement. My son who was in such pain, he could hardly force a smile. Smiles and laughs and his spirit has returned. I am not saying that he does not have “bad days”, but they are not “as bad” nor nearly as frequent. I am happy to dialog with you more. You can reach out to me and your grandson can also reach out to my son to chat via Zach’s blog on the Arthritis Foundation website:
http://community.arthritis.org/Robert48/blog
To connect with Dr. Standard and his team for his chats:
e-mail .(JavaScript must be enabled to view this email address)
Mrs. Cadden-
By the way, you can also find Dr. Standard and the Rubin Insitute of Advanced Orthopedics via Facebook. They will notify you of chats via this avenue as well. You can also, engage in discussions with other parents of Perthes patients to learn more and compare “notes” on you grandson’s challenges. Please note that you do have to let them know of your interest in participating in the chat in advance as it is invitation only and a password is required for safety. Also, other parents are on the chat at the same time, so while you wait your turn to Chat (typing) with Dr. Standard, you can “chat” with other parents as well. The colleague that we saw and who really helped our son is Dr. Khanuja.
Marianne-
My apologies that I missed the alert for your message. My son is treated in Atlanta currently; however, we had tremendous success working with Dr. Standard and Dr. Khanuja (out of Baltimore) who found a contributing cause to our son’s extreme and life limiting pain. Dr. Khanuja performed surgery to provide him with some relief. Our son takes an anti-inflammatory daily which helps, but he still has good days and bad days. He swims regularly to keep his weight down, his muscles strong and his ligaments long and stretched. He also sees a chiropractor and physical therapist regularly to ensure alignment and to provide exercises to keep his muscles strong to protect the joint and his ligaments and tendons limber. This is sometimes painful, but it is helping as well. Zach is also seen by a wonderful children’s pain clinic in Atlanta that provides some alternatives to drugs to help with pain control. I hope this helps. There is a book I recommend, “Managing Your Child’s Chronic Pain”
Liz- We finally found an orthopedist to work with in Atlanta. We have been seeing Dr. Robert Bruce, and we have been very pleased. Having said that, Dr. Bruce suggested that we see Dr. Fletcher, in the future, because of his experience and specialty with hips. They are both associated with the Emory Orthopedic and Spine Center off of North Druid Hills in Atlanta. My son is now 14. Are you connected with the Arthritis Foundation, Georgia Chapter? MED is a form of arthritis, and we have found a tremendous support network of parents through this organization.
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