Ashley Boynes-Shuck, Pittsburgh, Pa.
DIAGNOSED WITH JUVENILE IDIOPATHIC ARTHRITIS
Simple tasks that became impossible because of rheumatic disease:
- Blow drying hair
- Brushing teeth
- Playing softball
Ashley was diagnosed with juvenile idiopathic arthritis, also known as juvenile rheumatoid arthritis, at the age of 10. Ashley's grandmother has rheumatoid arthritis and some rheumatic diseases such as RA appear to have identifiable genes that play a role in passing the disease on to family members. Fortunately, Ashley was able to receive immediate care from the same rheumatologist that treats her grandmother. Through advocacy and social media, Ashley shares her personal story of living with RA and determination to find a cure.
Ashley's Story: Hope is the Best Medicine
At the age of eight, Ashley began to experience symptoms that included swelling, joint pain and fatigue. An ankle injury that would not heal led to a formal diagnosis two years later. Ashley was diagnosed with the most severe form of JIA – polyarticular juvenile arthritis – a type of arthritis that affects five or more joints.
Since her diagnosis, Ashley has never been in remission and has developed a number of other conditions, including osteoarthritis and drug-induced lupus. Still hoping to achieve remission or the subsiding of all symptoms, Ashley believes that care from a rheumatologist coupled with health education is the best way to manage her RA.
Living with a Rheumatic Disease: Social Media Helps Others and Eases Pain
Living with an autoimmune disease takes its toll. The hardest part for Ashley is not being able to do what she wants to do, and she often feels like a prisoner trapped in her own body— a reality many young women in their early twenties would find difficult to imagine. The simple tasks that most people take for granted are often the most difficult for someone with a rheumatic disease, and sometimes even blowing drying her hair can be a struggle for Ashley.
Ashley uses social media to help ease the pain of living with a rheumatic disease. An active patient advocate and positive voice, Ashley shares the highs and lows of living with RA on Twitter. She also makes sure that her followers are well informed about the latest rheumatology research and news by sharing information on her blog. Ashley enjoys journaling for wellness and has inspired more than 4,000 Twitter followers with messages of encouragement and honest accounts of dealing with the pain of living with a chronic condition. Ashley's passionate advocacy for rheumatoid arthritis has led her to speak before Congress, appear on local television and Oprah tweeted her to congratulate her on helping others to emerge from pain!
Ashley's Window of Opportunity: Finding a Solution
Ashley knows everyone's story is different. No two people experience the same pain and effects of living with a rheumatic disease. Ashley strongly encourages others to share her hope of finding a solution and a cure. Ashley advises others not to ignore symptoms and suggests that anyone with chronic joint pain and swelling visit a rheumatologist. Ashley hasn't given up on finding the right medications and alternative therapies to fight the devastation of RA and believes "there is a solution out there for me, and I am going to find it."
Nearly 300,000 children in the United States suffer from juvenile idiopathic arthritis. These children often suffer the same pain, disability and co-existing diseases as adults with rheumatoid arthritis. Ashley's fight with rheumatic diseases started as a child and has continued until adulthood – as has her determination to fight. Rheumatologists are the specialists in the treatment of rheumatic diseases like JIA, and early and appropriate treatment by a rheumatologist is the key to better outcomes for people like Ashley.
*If you are inspired by Ashley's story, visit the "Take Action" section to learn about your window of opportunity to help.