Arthritis Consumer Experts and Cassie and Friends Society have launched a canakinumab access campaign.
Juvenile arthritis (JA) affects approximately 24,000 infants to teens in BC and Canada, or 3 in every 1,000, making it one of the most common causes of chronic disability in children. Ten to 20 percent of those children have systemic juvenile idiopathic arthritis (sJIA), a severe and potentially life-threatening form of the disease – and many can’t get the medication they desperately need.
In partnership with Arthritis Consumer Experts, Cassie and Friends Society is leading a call for the BC Government to drastically improve the outlook of children with sJIA by allowing reimbursement coverage for canakinumab for the small number of children who need it.
Why have we launched our canakinumab access campaign?
Canakinumab is publicly funded in other Canadian provinces/territories but not BC, putting British Columbian children living with sJIA and other autoinflammatory diseases at a horrible disadvantage by denying them access to a life-changing therapy. Continue reading →
Join Cassie and Friends for their Scotiabank 5K & Half Marathon Team to raise money for all the kids affected by juvenile arthritis and other rheumatic diseases in BC.
Over the last 10 years, Team Cassie and Friends has laid it all on the course for kids with arthritis. Their team of 100 runners and walkers, from toddlers to grandparents, have transformed the lives of kids and families diagnosed with Juvenile Arthritis and other rheumatic diseases in BC and across Canada.
But, there is still so much more we can do to support and connect families, fund critical research and raise awareness – we hope you’ll join Cassie and Friends! Make a gift or sign up to be a part of their team. Cassie and Friends has created a virtual run for those who are unable to attend the Vancouver event.
Click here to register. Please use charity pin codes (all child registrations will be reimbursed):5K -17CFS5K or Half Marathon– 17CFS21K
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 Source: http://www.cbc.ca/news/health/aboriginal-youth-art-pain-hurt-healing-1.3852646?cmp=rss
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.
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 →
Arthritis presents many new challenges to women who are mothers: be it diapering a child, picking up the baby, or unfolding a stroller, these can be obstacles a mother with arthritis must overcome on a daily basis. Occupational therapist Linda Del Fabro Smith answers questions about mothers with arthritis. Continue reading →