Juvenile Arthritis: An Interview with Dr Patience White
300,000 kids in the US have Juvenile Arthritis (JA). Imagining kids, some of them too tiny to understand what's wrong and barely walking having to live with the pain of arthritis is inconceivable. Childhood just isn't supposed to be that way.
July is Juvenile Arthritis Awareness Month and I recently spoke to Dr. Patience White, VP of Public Health of The Arthritis Foundation about JA, symptoms and treatment and the national JA conference held in Washington DC this past weekend.
What is JA
Juvenile arthritis is one of the most common chronic illnesses that affect children, yet is still a fairly rare condition. JA is more common in girls and peak ages for diagnosis are 2-4 years old, preteen and teenage years. It happens more commonly in families with a history of autoimmune disease - as in adult rheumatoid arthritis, genetics play a role, but is not the whole story.
Dr. White explained that there are three primary subgroups of JA: systemic onset with features such as fevers and rash, polyarticular onset arthritis meaning more than five joints involved and pauciarticular onset with less than five joints. Only about 10% have a disease that's like adult RA.
JA attacks growing joints and the main symptoms are "decreased ability to move a joint, stiffness - stiff in the morning, stiff after naps - warmth, redness, swelling and limited mobility." For little ones who are too young to explain that it hurts, losing a developmental milestone - such as having walked but now doesn't - along with the stiffness and swelling are signals that parent should see their pediatrician and ask for a referral to a pediatric rheumatologist. Dr. White explained that there aren't a lot of pediatric rheumatologists, in fact, nine states do not have any and this is one of the key issues for arthritis advocates. Although many parents travel to see a pediatric rheumatologist, rheumatologists who treat adults also treat children.
Early diagnosis and treatment are key. "If you don't treat arthritis, [the kids] get growth abnormalities and they don't really fulfill their potential," Dr. White continued. "If they get treatment, they can go into remission and grow up like any other youth. If they are treated within the first two months, they have better outcomes that if they receive later treatment."
Children are treated with the same drugs as adults - "methotrexate is the gold standard and Biologics have been shown in studies to do miraculously well for children." Rates of remission vary between the subgroups, but Dr. White estimated that on average, over half do really well.
Equally important is to keep the joints functioning and the muscles strong, so physical and occupational therapy and splinting are as important as the drugs. The advance of the Biologics has changed the treatment philosophy to "keep kids out of wheelchairs, to keep them active, have earlier joint replacements and to keep the muscles strong to keep them going."
Challenges of JA
Dr. White spoke about three main challenges for parents of children with JA. One is winding their way through the healthcare delivery system - something to which anyone with a chronic illness can relate. Second is to make sure the child "is on all the appropriate developmental milestones and is treated like everybody else. It means having a youth who grows up and can function in the world is an adult."
Dr. White went on to explain that adults who grew up with JA say the most important thing was to be treated like everyone else, and having responsibilities, even if it was the coach who "got them to carry the water even if they couldn't play and other role models who treated them like everybody else." As someone who grew up with JA, I can relate to this - I often say that the biggest gift my parents gave me was to have expectations of me. The third big challenge is to as a family unit stay in a positive frame
What The Arthritis Foundations Offers
Dr. White told me that there are three main messages of this year's Juvenile Awareness Month: to get the word out about juvenile arthritis, to let people know there are excellent treatment available and that The Arthritis Foundation has "a huge amount of important information" and programs that can help children and families cope.
Local chapters of The Arthritis Foundation offers local conferences and summer camps for kids with JA, giving them the chance to spend time with others who are like them - this is very important, as they are often the only one in their class with this condition. On the national level, the Foundation's website has an area about JA with links to information, resources and advocacy initiatives. One of these resources is a website called Kids Get Arthritis Too, an online community where kids and youth can find information on JA and read about other children with the disease.
For more than 10 years, the annual national conference - held in Washington, DC this past weekend - has highlighted the importance of JA. It provides an opportunity for kids with JA, their siblings and parents to connect directly with researchers, pediatric rheumatologists and other medical professionals, aw well as other families to network and learn new coping strategies. It gives the children a connection to others like them, their siblings a chance to connect to other siblings in families where a child has JA and parents an opportunity to connect and share worries and successes with other couples, mothers and fathers. This conference has a powerful impact. Dr. White said that "as a pediatric rheumatologist, I've sent families to the conference in the transforms them. They come back to the clinic, full of renewed vigor and attitude, with new knowledge."
Check back throughout the month to read more posts related to JA, as well as our usual content. Lisa Emrich will post about her experience at the JA conference and we will feature several interviews related to JA. You may also want to browse through our specialty area on juvenile arthritis
Lene is the author of the award-winning blog The Seated View.