Living your best life with arthritis.

It’s time to see your rheumatologist. Let’s record and take notes!

Picture of smartphone and journal with pen for taking notesIt’s time to see your rheumatologist and specialist. Please have your recorder, pens and paper ready.

A study published in Psychological Science provides two hypotheses as to why note-taking is beneficial in a classroom setting. The first hypothesis is called encoding hypothesis, which says that when a person is taking notes, “the processing that occurs” will improve “learning and retention.” The second hypothesis is called the external-storage hypothesis – you learn by being able to look back at your notes, or even the notes of other people.

The same concepts can be applied to your medical appointments and is currently practiced by Dr. James Ryan, a family physician in Ludington, Michigan. With his patients’ approval, Dr. Ryan records their appointments, then uploads the audio file to a secure web platform for his patients. The recordings are annotated so that patients can easily search for specific topics in the conversation. Patients will be empowered and engaged in their own healthcare because they will have a reference of what was discussed. They can give family members access to the recordings as well.

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Battling rheumatoid arthritis – American Ninja Warrior style. #WeAreAllAbel

Battling rheumatoid arthritis – American Ninja Warrior style. #WeAreAllAbel

The TV series American Ninja Warrior (ANW) is a show where contestants compete to win the grand prize by finishing an obstacle course requiring strong, agile and determined athleticism. Contestants must have faith that they can conquer any obstacle put in front of them – the same type of faith some have when battling rheumatoid arthritis. In ANW contestant Abel Gonzalez’s case, this was true in the literal sense.

Abel grew up in Chicago with a rough childhood. His parents married young and had little financial means. In an interview with EverydayHealth, he said: “My dad was abusive. He sold tires at a flea market to try to help us get by. When I was 10, my mom and dad’s fighting escalated.” His parents eventually split up and Abel and his brothers were forced to split up. Abel and his brother were sent to live with family members in Texas, while his two younger brothers stayed behind to live with his mother in Chicago.

“I can remember my younger brothers sitting on the steps as Matthew and I drove away for good. It devastated me to be apart from my younger brothers. I was only 10. I thought that maybe I had caused my parents to get divorced,” Abel added.

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LA Dodgers’ Franklin Gutierrez Diagnosed with Ankylosing Spondylitis

The Los Angeles Dodgers baseball team has lost one of their outfielders to a form of inflammatory arthritis. Franklin Gutierrez signed with the Dodgers and was diagnosed with ankylosing spondylitis (AS) this year. While Gutierrez is likely acutely aware of the effects of his disease, the media has not provided much information about this more common than a rare form of inflammatory arthritis.baseball player sitting out possibly due to ankylosing spondylitis

The LA Times recently published an article covering the story: “Rare condition sends Dodgers’ Franklin Gutierrez to the disabled list“. Calling AS a “condition” discredits the fact that inflammatory arthritis is autoimmune in nature – like multiple sclerosis, type I diabetes and lupus – and disables people if not appropriately diagnosed and treated. The Arthritis Foundation states there are roughly 500,000 people in America that live with AS and the back pain associated with it. It also is a type of arthritis that affects men more than women – specifically males in their teens and twenties.

The issue with AS is that it takes on average seven years for men to be appropriately diagnosed; for women, 10 years. Because it strikes young people, symptoms – like chronic pain in the low back, Achilles tendon, and peripheral joints such as knees and in the hands (primarily in women) – are often ignored for years and written off as being “sports injuries” or simply “over doing it”. It is common for people to live with AS for years before they are properly diagnosed.

Gutierrez is one of the lucky few who has intensive treatment consisting of medication, diet, stretching, and massages from the LA Dodgers’ staff as stated in the LA Times article; still, this disease has forced him to sit out. Hopefully, more insight into examples like this can bring to light that autoimmune diseases like Gutierrez’s AS are far from rare, and are serious.

SickKids’ annual prom night gives patients the experience of a lifetime

Picture of two teens from SickKids Great Gatsby-themed prom

Picture taken from the @SickKidsToronto Instagram account

 

On Friday, patients at the Hospital for Sick Children in Toronto attended a Great Gatsby-themed prom. For many, this was a second chance at a fairy-tale and to experience what they may have missed at their own school.

This year’s prom marks the hospital’s eighth year of hosting this event. Both in-patient and out-patient teens who missed their own school proms due to illness or treatment are invited. For one night, they can forget about their illness and be a normal teenager. The event connects patients to other people who can understand what they’re going through.

In an interview with CTV News Channel Friday, Vanessa Williams, who gets treatment at SickKids for anxiety issues, said: “The SickKids prom allows kids to interact with each other and make new friends and make connections as well. Williams is also a member of the children’s council who helped to plan this year’s prom.

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The Big Sick film highlights writer’s real-life battle with adult-onset Still’s disease

The Big Sick film highlights writer’s real-life battle with adult-onset Still’s disease. The Big Sick film is based on the real-life courtship between Silicon Valley actor Kumail Nanjiani and his wife, writer Emily V. Gordon. In the movie, Zoe Kazan portrays Gordon onscreen, and Holly Hunter and Ray Romano play her parents.

The Big Sick film cast will cast light on adult-onset Still's disease

The romantic dramedy portrays how the married co-writers dealt with the extremely rare form of arthritis that brought them together 10 years ago. Back then, Gordon was a therapist in Chicago and has been together with the then standup comedian Nanjiani. Gordon’s initial symptoms were similar to a cold. She thought she had a really bad cold or pneumonia. She fainted in the middle of getting an X-ray and was rushed to the emergency room.

Gordon was eventually diagnosed with adult-onset Still’s disease (AOSD), a rare form of arthritis that can shut down major organs if untreated. Adult Still’s disease is characterized by high fevers, inflammation of the joints, and a salmon-coloured rash on the skin. It can either be chronic or episodic (having flare-ups a few times a year). In children, this disease is known as systemic onset juvenile rheumatoid arthritis; when it occurs in people over age 15, it is known as adult Still’s disease. In Gordon’s case, AOSD affected her lungs, causing water to accumulate in her lungs. As a result, she had trouble breathing. Continue reading

On June 25, run for kids with arthritis and their families!

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.

Cassie and Friends Team for Scotiabank 5k for kidsOver 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

If you have any questions, please feel free to contact Jennifer Wilson at jennifer@cassieandfriends.ca or visit cassieandfriendsrun.ca or David Porte at david@porte.ca

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