The Arthritis NewsletterSpring 2012
Introduction: SpringWritten by: Gordon Whitehead
What isn’t to love about Spring? The dreary dark days of winter have faded away. Heavy clothes have been returned to the rear of our cupboards where they more properly belong. Blossoms abound on the boulevard cherry trees and bulbs are peeking through the cool soil. The world again seems brand new and, as the tree sap rises in the warm sunshine, we too—matching the mood of the fauna and flora around us—become frisky, and feel compelled to look for fresh beginnings. In the words of Robert Browning:
“The lark’s on the wing
The snail’s on the thorn
God’s in his Heaven
All’s right with the world!”
Last spring, Linda Wilhelm decided that, contrary to Robert Browning’s conclusion in the verse cited above, all was not right with the world (Linda is a person with RA and a prominent consumer activist living in New Brunswick). She resolved to run for Parliament in the federal election held of May 2, 2011, in the hope that she could change things for the better, particularly in the area of medical care and treatment. In this edition of our newsletter, we bring you Chapter 2 of Linda’s election diary. If you read the first Chapter of her diary in our Fall issue, you know that Linda’s diary offers a uniquely engrossing, grass-roots view of what a political campaign is really like from inside the constituency electoral arena. Chapter 2 takes you right into the very heart of the campaign itself. We promise you that it will have you on the edge of your seat, as you follow Linda from function to function, from Legion Hall to television studio, from frosty encounters with political opponents to unexpectedly warm and spontaneous exchanges with strangers. It’s all wonderfully engrossing.
Also in keeping with the spirit of spring, this issue of our CAB newsletter salutes novel ideas and fresh approaches to some long-established problems in medical research and treatment. We feature an interview with ARC’s Dr. Antonio Avina, who has initiated a new research approach to the SARDS (Systemic Autoimmune Rheumatic Diseases). Because these several diseases are statistically rare within the larger population (0.5% of the BC population), they are sometimes termed “orphan diseases” and, accordingly, despite their gravity and impact, they have suffered from inattention when it comes to research, diagnosis, and the development of effective treatments. Dr. Avina tackled the issue of low disease visibility by pulling the SARDS into a collective grouping with sufficient critical mass to attract significant research interest and funding. In other words, Dr. Avina built a new “research orphanage” for a group of hitherto scattered and “homeless” arthritis conditions. In this issue, he defines SARDS and tells us about ARC research now underway into these several arthritis diseases in partnership with McGill University. “Build it and they will come”, is Dr. Avina’s motto.
We also have a look at the human face of the SARDS through the eyes of three very articulate individuals who live with some of these diseases. Marilyn Muldoon describes her struggle with Sjogren’s Syndrome, the most common of the inflammatory arthritis diseases after rheumatoid arthritis (RA) and one that not infrequently co-exists with RA in the same individual. Joyce Ma tells us about her very rare type of arthritis—polymyositis—a disease that she feels came close to costing her life before it was successfully diagnosed and treated. Melissa Patton provides a moving description of her ongoing struggle with scleroderma, a struggle that began for Melissa when she was just 3 years old. When she was finally diagnosed with the disease after a long 5 year search for answers, she was then the only known childhood case of scleroderma in Canada. Melissa’s story is poignant but inspiring. We think readers will find each of these personal voyages both uplifting and truly courage-inducing.
Spring means housecleaning. An Irish proverb notes that “a new broom sweeps clean, but an old brush knows all the corners”. The saying is a pertinent reminder that knowing our history as a medical community and where we have come from can often be vitally important in setting an effective course for the future. The Canadian arthritis community is hugely indebted to Mary Pack and the pioneering work she undertook to advance awareness and treatment for persons with arthritis. In a graceful and informative essay, which we have included in this issue of the newsletter, Ms Sheila Kerr examines Mary’s legacy through the eyes of volunteers who remember Mary well and the wonderful work she undertook for our collective benefit. Mary’s brush got into every corner of the Canadian arthritis world and gave it a good and thorough cleaning!! Her example continues to inspire us today, keeping our volunteers focussed and dedicated to the objectives she first enunciated and strove to realize.
Pensions are much in the news this spring. Will the retirement age be raised to 67? Will the Old Age Pension be scaled back? At this point, these may be just straws in the wind, but the demographic onrush of the “silver tsunami” suggests that some inevitable changes are on the way. For this reason, we felt that our readership would appreciate a brief compendium of factual information on Registered Disability Savings Plans. Laura Mackenrot, a specialist in this field, provides a helpful and concise overview.
And finally, the arrival of spring serves to awaken our desire for mobility. And for people with arthritis, facing the constraints the disease can impose on our movements makes the ability to drive a vehicle absolutely central to our everyday realization of freedom and independence. In recognition of this fact, in this issue we provide you with a compendium of useful motoring and driving tips.
When the sun shines and the warm air beckons, I think we all aspire a little bit to transform ourselves into “Mr. Toad in his motorcar”, don’t you?. So, get out those goggles and driving gloves!! Happy spring and happy motoring!!