Video Transcript – Inflammation: A Patient's Perspective

Inflammation in Chronic Disease Consensus Conference
May 17-18, 2011
Toronto, Ontario

What is your story?

Lynn Pike: "I was diagnosed at the age of 20 with asthma."

John Barnes: "I got rheumatoid arthritis when I was 21."

Marta Kisiel: "It turned out that it was an abscess from crohn's disease."

Gerry Coolyer: "They came up with a diagnosis for something called hairy cell leukemia."

Lynn Pike: "I thought as long as I could stop the wheezing that my asthma was controlled. When the ambulance arrived, I knew I was in a fight for my life."

Marta Kisiel: "My first introduction to crohn's disease was a surgical intervention."

John Barnes: "Got very fast on set rheumatoid arthritis. I was admitted to hospital because I could hardly walk by that time."

Gerry Coolyer: "I have been subjected to a rather excessive amount of toxic chemical and it saved my life."

John Barnes: "I managed to remain pretty active in most daily activities."

What are the health challenges for your disease?

John Barnes: "You know, I have had pericarditis, pleurisy and inflammation around the brain, so producing fluid were they are not wanted is something that I do well."

Marta Kisiel: "My crohn's disease has been very difficult to manage in terms of response to the immunosupressors. I think I've only had good response to steroids so, that I can't do that forever".

Gerry Coolyer: "I received higher quantities on a more frequent basis than would be standard care today, because they learned, of course they do, from clinical trials."

Marta Kisiel: "I mean, I head that, for crohn's disease, there is like 71 risk loci, plus all the other theories about what are environmental factors that contribute, and trigger factors. So I think that the hugest challenge is just to try to figure out how all these factors contribute and I don't know when that will be solved."

Lynn Pike: "And with research and education, I think that unfortunately my story is way too common and it can be prevented. Coming up with better control medications, more prevention medications, I think that would be the next challenge after curing it."

Could research have provided answers to your health challenges?

Marta Kisiel: "Now research; there is more treatment options available. I am "kind of" in that harder to treat category, so I think that research definitely can help me."

Gerry Coolyer: "Well research did provide the answers for me."

Lynn Pike: "I definitely benefited from research, from understanding what causes the inflammation in the lungs, from understanding my triggers."

Marta Kisiel: "I think I see a role as two folds; that is really simple to express, but too extremely difficult to tackle. So find the cause, and then find the cure."

John Barnes: "I certainly have benefited from research. I have change drug therapies over the number of years."

How has inflammation affected you?

Marta Kisiel: "Inflammation means pain."

Gerry Coolyer: "Discomfort and swelling and inconvenience for people."

Lynn Pike: "Inflammation for me is literally life and death."

Marta Kisiel: "If I am having a flare, that there is going to be inflammation, there is going to be pain, it definitely means an impediment to my life. So if I can get that under control, then my life can progress a lot better and I'd probably have a lot less stress about the future."

Produced and directed by the following CIHR staff:

  • David Hartell
  • Valérie Turcot
  • Andrew McColgan
  • Esther Rosenthal
  • Tanya Gallant
  • Marc Milot
  • Elizabeth Robson
  • Julie de Courval

Filmed and edited by:

  • Azure Production

Special thanks to the following participants:

  • Lynn Pike
  • John Barnes
  • Marta Kisiel
  • Gerry Collyer

Thank you to the following organizations for making this video possible:

  • The Lung Association
  • Crohn's and Colitis Foundation of Canada
  • Canadian Cochrane centre
  • Lupus Canada
  • Patient Partners in Arthritis program
  • Ontario Cancer Research Ethics Board
  • Canadian Cancer Research Alliance