JUVENILE ARTHRITIS
The most common type of juvenile arthritis is juvenile idiopathic arthritis, formerly known as juvenile rheumatoid arthritis. Children as young as 2 may be affected. Other rheumatic diseases affecting children include juvenile dermatomyositis, juvenile psoriatic arthritis, systemic lupus erythematosus and systemic arthritis, or Still’s disease.
Here are the common symptoms of juvenile arthritis: pain, stiffness (particularly in the morning); swelling or redness on the skin around painful joints (which is a sign of inflammation); fevers; faint pink rashes over knuckles, across the cheek or other parts of the body; and lack of appetite.
For a more complete description of common symptoms of juvenile arthritis, go to the Arthritis Foundation's website (www.arthritis.org).
Source: Arthritis Foundation
Emme Pennington is an adorable, almost-7-year-old girl who loves to swim and play soccer.
The girl with big brown eyes and golden brown hair also suffers from arthritis, representing a surprising face of a joint disorder typically associated with older adults. On days when Emme, who lives in Dunwoody, experiences acute pain and inflammation, the young girl is not only unable to play, but it can be excruciating, even impossible, for her to simply walk around the house.
Emme is not an anomaly of this potentially crippling joint condition. Almost two-thirds of people with arthritis are under the age of 65. About 53 million adults and 300,000 children in the United States have a form of arthritis, which is an umbrella term used to describe more than 100 diseases. Those include everything from osteoarthritis, a degenerative joint disease, to autoimmune forms of the disease like rheumatoid arthritis.
In Georgia alone, an estimated 10,000 kids have juvenile arthritis, according to the Centers for Disease Control and Prevention.
The Atlanta-based Arthritis Foundation is rebranding itself and boosting its emphasis on children to better match the reality of this chronic condition and to better serve families across the country. In a series of changes rolled out this month, the Arthritis Foundation unveiled a new brand message: "Champion of Yes."
Ann Palmer, president and CEO of the Arthritis Foundation, said in what is the first major rebranding in the organization’s history of 60-plus years, it was important to find a brand that resonated with everyone.
“For the mom with the child who doesn’t want to go to school, and for those focused on finding a cure, this is about saying ‘yes’ to more in life,” she said in a recent phone interview.
Key elements of the rebranding shift in strategy for the organization include:
- A push for more pediatric rheumatologists. With fewer than 250 practicing pediatric rheumatologists across the country, according to the Arthritis Foundation, the organization is advocating for Congress to fund a loan forgiveness program for doctors who specialize in pediatric rheumatology.
- More resources for children and families. While the foundation organizes family get-togethers and special camps for children with arthritis (Camp AcheAway at Camp Twin Lakes), the foundation will boost its staff and volunteer network in communities across the country to help families deal with day-to-day challenges on a local level such as helping families whose children may be struggling with participating in activities at school.
- Highly personalized Web tools. The foundation has revamped its website to create a highly sophisticated, highly personalized online tool that goes well beyond the basics of finding a doctor and fitness class in your ZIP code. The new Web tool will include information on what insurance doctors take and specific information about fitness programs to help determine whether a program is a fit for varying degrees of joint pain.
Getting an arthritis diagnosis is not always straightforward. With Emme, it all started with a strep diagnosis in August 2012, but Emme struggled to fully recover. As weeks passed, Emme experienced high fevers and rashes. Then Emme took a turn for the worse: Her right elbow began to swell and she started limping.
Amy and Seth Pennington set up an appointment with a pediatric rheumatologist after multiple visits to the pediatrician and tests to not only rule out a lingering case of strep, but also leukemia, lupus and other illnesses. With the first opening months away, Emme ended up in the emergency room at Children’s Healthcare of Atlanta with pain and swelling (Emme couldn’t even grip a fork and spoon to feed herself) before that appointment. In November 2012, Emme, just 4 years old at the time, was diagnosed with systemic juvenile idiopathic arthritis — a serious, complex and rare form of arthritis that can cause inflammation of internal organs including the heart.
The Penningtons said they are encouraged by new, effective medications for young people with arthritis, but they can’t help but worry about the long-term impact of the medication. While Emme is responding well to her current medication, it comes with serious side effects, including weakening her immune system. (That makes her more susceptible to the flu, staph and other infections.) Emme must see a pediatric ophthalmologist every three to four months because arthritis can attack the eyes, and one of the possible side effects of the medication can cause cataracts.
The Penningtons said they are hopeful there will someday be a cure. And they are hopeful for pain-free days for Emme.
“We hope she can do everything in life without limitations put on her,” her mother said. “We feel like our daughter and other kids (with arthritis) are very determined and very brave to go through life with so much courage and grace, and they will not let this disease stop them.”
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