Great things are happening with Lynch syndrome, at least in the Sacramento River Valley of California. At the Undy500 Race, sponsored by the Colon Cancer Alliance, in March, LSI had a team which not only ran, but also worked with outreach efforts to others who were survivors of colorectal cancers and who, potentially, may have Lynch syndrome.
In 2009, there was very few upon the internet who could be found with Lynch syndrome. There were no advocacy organizations, no dedicated websites, no detailed web pages. There were 89,800 research articles which were listed for Lynch syndrome, however most were behind locked internet walls and requiring $30 per article to access and read. No wonder few physicians had ever heard of Lynch syndrome. No wonder families were closeted.
The first few years were difficult, at best. As Lynch syndrome came out of the closet, and questions were asked, controversy occurred. Controversy is good. It opens the doors to communication and can often knock down walls...finally, it allowed for the voice of the patient and the voice of advocacy, which is often not understood by the medical community.
The first few years, while exhibiting at medical conferences were dismal and often demoralizing. Very few physicians had ever heard of Lynch syndrome. As time has elapsed, over the past four years, at one conference of Internists, almost every single one had a good understanding of it and how to test for it. The Osteopathic physicians had embraced it and over fifty percent contacted understood Lynch syndrome and how to diagnose it. The General Practitioners, urologists and gynecologists didn't have a clue and many nurses had never heard of it and many still don't...
But something exciting occurred at the Race...as we spoke with survivors about Lynch syndrome, we found most had heard of it, many had been tested and there were many who were pending testing. The medical professionals who were participating in the race, had all heard of it. In 2009, this would never have occurred. We are very grateful to the medical professionals at the University of California, Davis, Kaiser Permanente, Sacramento, and Sutter Healthcare, who have worked hard at identifying those with the Lynch syndrome and providing diagnosis as well as to the commercial testing reps who have been working hard to educate the general physicians in the area. Good job, Docs, NPs, Nurses and GCs, in your determined efforts to protect families and save lives.
Great things are happening for our families in Northern California!