Tuesday, November 12, 2013

The Juvenile Arthritis Association–Making a Difference for Children with JA

Up until Monkey was diagnosed with Juvenile Arthritis I had never heard of it. I’d heard of Juvenile Diabetes, Leukemia, and Cystic Fibrosis but never of a child having Rheumatoid Arthritis. Even after getting Monkey’s diagnosis I still couldn’t find much on the subject until I started really digging. Over the past year and a half I’ve been fortunate to find support groups and meet other families who are also living with JA. Through them I have been lead to articles and seen statistics on JA and the research that is currently being done to better the lives of kiddos suffering from JA and other immune diseases that fall into that category. With all of the ‘well known’ childhood diseases I listed above they each seem to have their own specific non profit organization. A group working hard specifically for those kiddos to not only find ways to better their life but to also fund research to better their future.

The Juvenile Arthritis Association was founded by parents of a child with JA. They know first had what life with this disease is like and they knew that things needed to be addressed. I had the pleasure of speaking with one of the founders and let me tell you they are passionate about their purpose. They have such a fire and drive to help these children. They know what needs done and they are working day and night to get there. For me, knowing that the founding members of this organization understand completely where I am is such a comfort. To know that they’ve experienced the pain, confusion, heartache and difficulties we have reassures me that their hearts are in the right place. I’m so thrilled that there is now an organization specifically working for Juvenile Arthritis. I’m excited to watch this organization grow and I hope to be a part of it any way I can.

Below is some important information from their “about us” page on their website. (There is a lot of info here but please take a moment to read…you’ll be amazed.) If you don’t know much about JA this will hopefully open your eyes and also light a fire in you as well to want to work with them to make a difference in the lives of the thousands of kids living with this awful disease. If you’d like to follow the JAA in their efforts you can like their Facebook page and follow them on Twitter. Want to make a donation and help fund the research needed to make a better future for these kiddos? You can do that too! Just click here for donations.

Juvenile Arthritis Association (JAA) is a 501(c)3 nonprofit organization that was formed to address the enormous lack of awareness, funding and resources going to children and young adults diagnosed with pediatric rheumatic diseases.

Pediatric rheumatic diseases, often broadly categorized as juvenile arthritis, are a family of autoimmune diseases characterized by severe inflammation and pain that can occur in any part of the body. These diseases can be extremely debilitating and in some cases fatal.

A 2007 CDC study estimates that 294,000 U.S. children (1 in 250) have been diagnosed with arthritis or another rheumatologic condition. These findings establish that pediatric rheumatic diseases are more prevalent than many other chronic childhood diseases. In fact, rheumatic diseases affect more children than juvenile diabetes, cystic fibrosis, and muscular dystrophy combined.
Despite this statistic, pediatric rheumatic diseases receive far less research funding, both at the federal level and through private philanthropy, than many other diseases with far less prevalence. Best estimates place the annual total of private funding in the U.S. at around $2 million. The following table puts that figure into perspective, comparing the annual private funding of several common pediatric diseases.

In addition to the overall lack of research, there is an equally severe shortage of specialists to treat these diseases. There are fewer than 200 board certified, practicing pediatric rheumatologists nationwide. Eleven states in the U.S. have none, and nineteen more have three or fewer. Countless children are suffering the devastating consequences of inadequate access to these specialists, and many face irreversible damage caused by late diagnosis and treatment. Further, families face tremendous logistical challenges, with many traveling hundreds of miles to see a specialist.
Refers to board certified, practicing pediatric rheumatologist
Sources: Michael Henrickson, MD, MPH, American Board of Pediatrics

Even under treatment, children with rheumatic diseases face a difficult struggle. They are routinely prescribed chemotherapy, biologic medication, and steroids, all of which come with significant side effects. In addition to physical difficulties, young people diagnosed with these diseases endure equally devastating emotional hardships because there is virtually no public awareness surrounding these illnesses. In school, they are often bullied by peers and subjected to inappropriate physical demands by teachers and administrators. Likewise, young adults in the job market often face intolerance of their physical limitations and medical needs.

The Juvenile Arthritis Association is committed to the ideal that the status quo can and must be changed. Though there are other advocacy organizations focused on arthritis and rheumatic diseases, very few are focused exclusively on children and young adults. Consequently, resources earmarked specifically for pediatric rheumatic diseases remain scarce. Due to the utter lack of resources available in the fight against pediatric rheumatic diseases, the prospect of a cure is currently nonexistent.

Believing that meaningful change will require drastic action, JAA was formed to lead this charge. JAA has an ambitious agenda to bring unprecedented public awareness and private funding to pediatric rheumatic diseases in order to significantly improve the lives of individuals battling these conditions and the families fighting alongside them.