Arthritis Foundation volunteers Colleen Ryan and Dr. Helen Emery collaborated on the following open letter to the New York Times about an article that ran Feb, 3, 2013. The article, The Boy With a Thorn in His Joints, generated a lot of feedback among the pediatric rheumatology community and parents of children with Juvenile Arthritis.
Re: An Open Letter to the Editor of The New York Times
From: Colleen Ryan and Helen Emery, MBBS
We write, as the parent of a child who has had juvenile onset arthritis for twelve years and a pediatric rheumatologist with over thirty five years of experience, in response to the article “The boy with a thorn in his joints” (NY Times magazine, February 3, 2013). We appreciate that the Times has published an article about Juvenile Arthritis, as the frequency (about 300,000 children in the US), the severity and potential for permanent disability are under-recognized. Unfortunately, the public perception of juvenile arthritis is that like the aches and pains in grandmother’s knee when in fact it is a serious inflammatory systemic illness. The article also reveals how hard it can be for parents dealing with this or other chronic conditions to try to make the best decisions on behalf of their affected children. But we are very concerned about the lack of balance in this article.
We have come a long way in our knowledge of optimal management of juvenile arthritis, and unlike thirty years ago, we now have very good evidence based treatments which can control the disease and prevent joint damage. No physician can ever promise with absolute certainty that a child will respond to a particular drug or will be spared side effects, as there are considerable variations in disease between individual children, but we certainly know what used to happen to children before we had these treatments available – children had chronic pain and progressive joint damage, and sometimes blindness and death. Many could not attend school or participate in sports, and some needed joint replacement surgery before they finished high school to relieve severe pain and maintain their independence and mobility. Now we have strong evidence for both safety and efficacy of our current approaches based on well designed clinical trails of medications such as methotrexate and the newer biological agents, and a large majority of affected children can lead normal lives. These agents have been carefully studied in thousands of patients. There are certainly some children who have an underlying gastrointestinal reason for their arthritis, but it is both simplistic and inaccurate to think that diet, gluten free or otherwise, is the “fix” for juvenile arthritis. Nothing is harder for us to watch than a child deteriorating because of parental refusal to treat the child adequately because of a choice to follow alternative treatments rather than an evidence based approach. Certainly, physicians will work with families who wish to try alternative therapies or dietary changes, provided overall good health and nutrition is maintained, as was noted in the article.
For parents, these medical decisions are not made lightly or without great research and consideration. The implication that parents who choose to follow “traditional” care do so blindly and without great thought to the whole care of their child is not only unfair and untrue, but also hurtful.
We are very concerned that presenting the opinion of a single parent who has an admitted fear of medications and a belief in an unproven alternate treatment as a true representation of the best way to manage juvenile arthritis is both misleading and confusing for parents dealing with a difficult illness. She, and other parents, may be helped by reviewing the information on Juvenile Arthritis on the Arthritis Foundation website, www.arthritis.org, and interacting with other parents through the blogs, conferences, camps and other opportunities provided by the Foundation. We want to emphasize that comprehensive medical care based on strong evidence is the best and safest approach to the management of children with Juvenile Arthritis.
Colleen Ryan Helen Emery MBBS
Parent of a child with arthritis Pediatric Rheumatologist
Chair, Juvenile Arthritis Alliance Member, National Board
Arthritis Foundation Arthritis Foundation
New York Times Magazine letter to the editor JA