It’s Arthritis Awareness Month (yay!) … so I want to bring awareness to a very rare disease that often mimics Juvenile Idiopathic Arthritis. This illness is called Farber Disease (a.k.a. Farber’s Disease, Farber’s lipogranulomatosis, ceramidase deficiency, Fibrocytic dysmucopolysaccharidosis, and Lipogranulomatosis.) Currently there are only 80 diagnosed, confirmed cases of Farber Disease worldwide! However, there may be … Continue reading
Tag Archives: pediatric rheumatology
Don’t Bench Yourself: An Inspiring Juvenile Arthritis Story by Ashley Boynes-Shuck
Today, I spoke at an Arthritis Foundation Juvenile Arthritis Family Day event in my area. I wanted to share the text of my speech with you all below. I will have videos and photos at a later time, to share on my arthritis Facebook page. Enjoy, and feel free to leave a comment letting me know … Continue reading
Advocating for Arthritis and Rheumatic Illness – by Ashley Boynes-Shuck
Today was the last day of the 2014 Arthritis Foundation Advocacy Summit in Washington D.C. According to the official website, “The Advocacy Summit is an annual event when people living with and affected by arthritis come from every corner of the United States to convene in Washington, DC.. There they learn how to … Continue reading
The Pediatric Rheumatology Shortage: What’s a Juvenile Arthritis Patient to Do? – by Ashley Boynes-Shuck
Approximately 300,000 American children and teens live with juvenile arthritis – that’s about 1 in 250. Yes – you read that correctly: 1 in 250 kids suffers from arthritis. If that number isn’t eye-opening enough, check out this staggering statistic: there are only 250 active and board certified pediatric rheumatologists in the United States. Unfortunately, … Continue reading
Kids, Teens, and Young Adults Get Arthritis, Too! Celebrate JA Awareness in July – by Ashley Boynes-Shuck
Kids and young adults get arthritis, too. And July is Juvenile Arthritis Awareness Month. According to the Arthritis Foundation, JA refers to any form of arthritis or arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Approximately 294,000 children under the age of 18 are affected by pediatric … Continue reading