In honour of Juvenile Arthritis Awareness Month in Canada, we have compiled a list of interviews from this year’s CRA Annual Scientific Meeting & AHPA Annual Meeting in Ottawa. The interviews below highlight models of care, advocacy, clinical practices, and different therapy options for juvenile arthritis. Continue reading
Juvenile arthritis strikes up to three in 1000 children in B.C. and is one of the most common chronic diseases among children. Cassie and Friends’ Kids on the Block, an educational puppet troupe, is spreading awareness about juvenile arthritis at elementary schools like the one Sarika Adriaanse attends in Vernon. The aim is to help children understand arthritis. With the aid of a $2,500 grant from Telus’ Community Board, the performance will visit several other interior school boards.
The Aboriginal Children’s Hurt and Healing Initiative wanted to answer one simple question: What does pain look like? Not what it feels like, but what pain would look it if you had to express it on paper, or in this case, canvas.
In an interview with CBC News, John Sylliboy, community research co-ordinator with the Aboriginal Children’s Hurt and Healing Initiative, said: “Aboriginal children feel and experience pain just like anyone else. It’s just that they express their pain very differently. They don’t necessarily verbalize their pain, or they don’t express it outwardly through crying or through pain grimaces. A lot of kids, they just suck it up. That’s what they say all the time. ‘We just suck it up.'”
The research study spawned in 2008 when Margot Latimer, a clinical scientist at the Centre for Pediatric Pain Research at the IWK Health Centre in Halifax, observed there was no First Nations youth being referred to their pain clinic at the IWK hospital.
“My painting is about pain and the black represents how she feels inside. But she has like this white kind of atmosphere and it separates it from her pain.” – Artist, 16-year-old
Do it for the kids! Participate with your family and friends in the Scotiabank Charity Challenge 5K or Half Marathon with Team Cassie & Friends! Proceeds support research and programs for kids with juvenile arthritis and other rheumatic diseases and their families. Free kid registrations, activities and prizes. If you are unable to make the run, you can still participate by cheering for the team on along the run/walk route!
Today is the last day to register online! For more information about the event and to register online, please visit www.canadarunningseries.com and register with the charity code 16VCASSIE.
About Juvenile Arthritis
The question is, how badly does it hurt?
A recent study conducted to evaluate pain measures developed by the Patient Reported Outcomes Measurement Information System (PROMIS) under the National Institutes of Health help captured the young patient’s perspective of living with chronic pain. The study addressed the different categories of pain experience and language used by children when they talk about chronic pain. In an interview with the Medical Xpress, researchers identified these as:
- Pain behaviour – The child initiates he or she becomes irritable or suffers a lack of appetite (or other behaviour) when in pain.
- Pain interference – The child describes slower movement, such as walking, or lack of energy due to pain interference.
- Pain quality – The child describes pain as sharp, cutting, dull or achy.
The research study was based on the results of individual and focus group interviews with 32 children and with parents of children with chronic pain, such as those affected by juvenile arthritis, sickle cell anemia, and cerebral palsy. Continue reading
Any prospective parent worries about managing their own lives, let alone that of a small child. Being a parent is one of the hardest jobs we may ever do. It is physically exhausting. It is emotionally draining. It is 24 hours, 7 days a week. If you have arthritis, you may feel overwhelmed by the challenge.
The good news is, careful planning will help with the transition to parenthood. For those with arthritis who are already parents, there are several strategies for reducing the hurdles you and your family may face. Continue reading