Getting Creative with Disease Awareness: FSIG Takes to the Road

Kathleen Coolidge | April 09, 2013

In honor of Fabry Awareness Month, Kathleen Coolidge highlights a unique initiative by the Fabry Support & Information Group (FSIG) in Missouri. A big "thank you" goes to Jack Johnson, FSIG's Executive Director, for sharing this with our Rare Community readers!

Though Jack’s group is based in Missouri, he travels around the country to help raise awareness about Fabry disease. I’ve known Jack for several years, and one particular approach he takes towards educating physicians has always struck me as creative and dedicated. I thought readers of this blog might find this interesting, so I asked Jack to share his experience with us. Jack can be reached at:

Raising disease awareness and educating physicians about how to recognize affected individuals in the rare disease space is a never-ending task. As just one of an enormous constellation of rare conditions, raising awareness for a disease where there may be no visible signs of illness can be particularly challenging.

That’s what led me to launch FSIG’s “Eyes on Fabry” program to educate and spread awareness among optometrists. With Fabry leaving few outward signs on those afflicted, it is crucial to highlight findings that can lead to a correct diagnosis—and in Fabry disease, a regular eye exam can often be the trigger that leads to that diagnosis.

As patient group leaders, we all have many demands on our time.

An FSIG representative attends regional optometric society/association meetings along with a physician or optometrist who gives a detailed presentation on Fabry disease signs, symptoms and impact. This is followed by one or two Fabry patients sharing their stories of living with the disease, and then giving optometrists a firsthand look at a live patient’s corneal opacities through a slit lamp examination, so the medical professionals can learn what to watch for. A slit lamp is an essential tool, as the “whirls” are only visible using this type of specialized microscope. The “Eyes on Fabry” program works to increase the number of Fabry-aware optometrists and shorten the frustrating odyssey many patients experience in reaching a final diagnosis.

The optometry community has been extremely receptive to the program, and their evaluations indicate that they find the presented information highly valuable, naming hands-on observations of actual patients as one of the highlights. Many of the society presidents have also arranged for continuing education credits, adding to the value of the program for attendees. The program has gained a very positive reputation and we are now in the process of expanding to additional states, in addition to my home state of Missouri.

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