Marilyn Walsh Caregiver, consumer/patient, peer reviewer, patient advocate Hamilton, Ontario

Looking at Marilyn Walsh today you would never guess she felt overwhelmed when she first became involved in The Cochrane Collaboration seven years ago.

She is involved with three Review Groups, has given many presentations related to her volunteer work with Cochrane and has contacted nearly 150 organizations to tell them about the Collaboration.

“Once I got used to the idea I never looked back,” says Marilyn.

Marilyn was recruited into Cochrane by another patient consumer and at the time she knew nothing about The Cochrane Collaboration and very little about research. “I hadn’t even heard of a systematic review,” explains Marilyn.

She now uses the skills and training she acquired through the Collaboration to help educate other consumers and organizations about the evidence in The Cochrane Library.

Marilyn has a form of inflammatory arthritis, known as ankylosing spondylitis. It predominantly affects the spine and girdle joints – the shoulders and hips. Marilyn’s soft tissue and tendons, along with both smaller and larger joints, are affected. In its most severe form it can cause fusion of the spine. Her spine has fused, but Marilyn feels fortunate it has fused in an upright position rather than a stoop, like it has for so many others with her condition.

Marilyn experienced pain for at least 12 years before being diagnosed and was referred to several psychiatrists as her pain was thought to be stress-related. Lack of Magnetic Resonance Imaging (MRI) allowed many people like Marilyn to slip through the cracks without being diagnosed. She explains that the hallmark of ankylosing spondylitis is pain in the sacroiliac joints causing changes which now can be detected with an MRI within a year of onset. “It’s a literal pain in your butt – pain in the low back and buttocks,” explains Marilyn.

Marilyn describes finally being diagnosed as, “Beyond a relief. If I was physically capable at the time I would have kissed my rheumatologist’s feet. It was the best day of my life.”

She spent 10 years, from the time she was 25 to 35, suffering from the undiagnosed AS. “I call this my lost decade. I spent most of that time lying on the floor because I couldn’t sit in a chair.”

Marilyn was inspired to embark upon one of her latest initiatives after seeing other people with her condition at an AS forum in Toronto in 2010. She was distressed after seeing the physical condition some of the attendees were in and says the questions they asked made it evident that many did not know where to find reliable health information. Marilyn knew then she had to share her knowledge with others.

After the Canadian Spondylitis Association published an article Marilyn wrote in its national newsletter, she approached Tamara Rader, the Trials Search Co-ordinator (TSC) of the Cochrane Musculoskeletal Review Group, based in Ottawa, to ask if they would like her to contact other AS organizations. Tamara was thrilled to have Marilyn take this on.

Marilyn contacted 79 organizations and over the course of two years 15 organizations got in touch with her and promoted The Cochrane Library.

Her success with the AS organizations inspired Marilyn to talk to the Managing Editor, Karin Dearness, of the Upper Gastrointestinal and Pancreatic Diseases (UGPD) Review Group (also based in Canada) for her thoughts about approaching GI-related organizations. She advised Marilyn to seek the advice of the Cochrane Review Groups with a similar focus to the UGPD Group. With the blessing of the Inflammatory Bowel Disease and Functional Bowel Disorders, Hepato-Biliary, Colorectal Cancer, and the UGPD Review Groups Marilyn began the second phase of her information dissemination journey.

Six organizations, including the International Foundation for Functional Gastrointestinal Disorders, chose to feature information about The Cochrane Collaboration and The Cochrane Library on their websites.

Marilyn contacted 143 organizations in total and she highlighted some of the organizations’ responses on the poster she presented at the 2014 Cochrane Colloquium in India. She hopes the poster inspired other consumers to reach out to organizations in their disease areas.

“It was very satisfying,” shares Marilyn. “I had some wonderful email exchanges with some very appreciative representatives from the organizations.”

Marilyn not only consults The Cochrane Library for her own health and advocacy, but she also uses it in the care of her aging parents. One instance in particular involves her then 83-year-old mother losing sight in her left eye overnight due to age-related macular degeneration (AMD).

This diagnosis, which Marilyn now knows is common in the elderly, came with a recommendation that her mother receive treatment via needles injected into her eyes.

“In my heart I knew that was probably the best of course of action, but it is scary having needles put into your eyes. So, I wanted to make sure there weren’t any less invasive treatments,” explains Marilyn. 
“I immediately went to the Cochrane Summaries page and simply keyed in age-related macular degeneration and up came everything I needed. I knew I didn’t have to waste time searching anywhere else.”

Satisfied with the information she found on the Cochrane Summaries page, Marilyn says, “I knew we didn’t have time to waste getting second and third opinions.”

Marilyn’s mother, Joyce, now gets injections in both eyes every month. “We live in the doctor’s office now,” jokes Marilyn. “Being the sole caregiver for elderly parents, it is very comforting to know that I have a reliable place to look for reliable health information.”