Finding My Voice: 5K for Stevens Johnson Syndrome Foundation

Wednesday, April 10, 2013

5K for Stevens Johnson Syndrome Foundation

It was time for the 5K for Stevens-Johnson Syndrome. For those who don't know about Stevens-Johnson Syndrome, just check out some information from the Stevens-Johnson Syndrome Foundation website: http://www.sjsupport.org/pdf/SJS_factsheet.pdf Stevens-Johnson Syndrome is a rare disease. The information I found said that incidences occur in 1.5 to 2 people per million each year. This makes the fact that I personally know two Stevens-Johnson Syndrome patients quite rare indeed. There are not a million people in our small town, but there are two that have Stevens-Johnson Syndrome. One happens to be the girl who inspired this 5K. The other happens to be my husband.

I fortunately have never lived through an outbreak with him. I've had it explained to me that Stevens-Johnson syndrome is an allergic reaction to your bodies' own immune system kicking in OR to the medications necessary to fight off your illness. The long term effects of living with Stevens-Johnson Syndrome include avoiding tons of different medications, including some over-the-counter. Illness takes a bit longer for my husband to overcome and canker sores are a pretty common side effect of all illnesses. We do our best to just keep everyone healthy.

The 5K itself was awesome. It was a chilly, breezy morning. Perhaps the runners appreciated the cool weather. It was probably better than running in 100 degree Kansas weather. The participants all started together, but quickly broke into 4 groups: The bikers, the runners, me in my power chair, and the walkers. Our route took us back past the starting/finish point at a midpoint through the 5K. It was a bit disheartening to pass the midpoint as some ahead were already reaching the finish. But, I pressed on to the end.

I'm thankful there were a couple of participants close enough ahead of me that I could watch and follow them throughout the entire 5K. I couldn't remember all the route instructions and although there were signs along the route to keep us heading in the right direction, I didn't trust they would still be standing with the wind. I'm thankful that they were and I'm thankful I had someone to follow. And, I'm thankful those ahead of me did not lead me in the wrong direction.

My 5K time: 48 min 36 sec.