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Sight For Sore Eyes SJS

www.sightforsoreeyesjs.com

Olympic Athlete

While I was pottering around the house yesterday, Ian was watching some of the olympic swimming events and he said "you know mom, I could go into the olympics because my eyes always feel better in the water". That really got me thinking about athletes with SJS and I guess what I found:

27 year old Judo Athlete, Lisamaria Martinez (Union City, Calif. / Stanford Judo) will represent the United States in the upcoming 2008 Beijing Paralympic games. The games are scheduled from Sept 6-17 2008. Lisamaria Martinez has chiseled calves, rock-solid quads and practically no eyesight.

She can make out the colors on her certificate for finishing second at the Para-Pan-American games in Rio de Janeiro , but can't read the words. Martinez went blind at age 5, the result of a severe allergic reaction known as Stevens-Johnson Syndrome. The illness could have killed her, but Martinez doesn't remember it.......................

When Martinez battles blind competitors—who make up only about 5 percent of her opponents—they immediately lock up: gripping each other's lapel with one hand and sleeve with the other. "It's crazy if you're at a tournament," she said. "You can just feel the intensity coming from their arms."

When she's fighting, Martinez can visualize her moves. With her eyes she can get an idea of whether her opponent is taller or shorter, but not much else, she said. "I can't see her face, if she's giving me a dirty look." At five feet four inches tall and 151 pounds, Martinez is among the shorter women in the up-to-154-pound weight class. She works out nearly every day to maintain her weight.

When she isn't training, she's teaching. Not judo, though. Martinez earned a master's degree in educational psychology, specializing in teaching blind people to get around with a walking stick. She has a few students from the Lions Center for the Blind in Oakland, and she expects as much of them as her parents expected of her. "I want them to be as independent as they can be," Martinez said. "Being blind doesn't mean they should stay at home and wait for someone to take them by the arm and tell them when to go."

GO GIRL - BRING HOME THE GOLD

SJS and families

Stevens-Johnson Syndrome Affects Mother and Son Taking Nevirapine

Jun 3, 2005 | www.aidsmap.com

Two cases of the rare side-effect of nevirapine, Stevens-Johnson syndrome, involving a mother and her son, are reported in the June 10th edition of AIDS. The investigators "are unaware of any previous familial clustering" of Stevens-Johnson syndrome associated with nevirapine treatment.

I had intended to do my post today about how SJS affects family relationships. I was doing some research and found the notation above about a mother and son who both had SJS from the same drug. I can't even imagine what kind of hell that was and I am particularly worried about sequelae if they survived. It is hard enough as a mother to watch a child with SJS, never mind have to deal with it while trying to take care of a sick child. Compared to that the regular interfamily trials and tribulations are of no consequence. I tried to find other such case histories but so far this is the only one I found.

8 Drugs Doctors Would Never Take

I received an email from Donna regarding 8 drugs that doctors would never take. If you would like to read the article click here.

SJS Awareness - Ribbons

Continuing our series of SJS ribbons designed by Elisabeth - as always please feel free to contact me for the template.

SJS Awareness tip: May have to wait for this one, but instead of exchanging gifts at christmas, ask work colleagues to each find a charity or non profit group that they would like to donate to. Ask everyone to put an information sheet about the organization they choose on display on their desks. Of course you will pick the Stevens Johnson Syndrome Foundation and hand out fact sheets as you have visitors to your desk. The idea is that the staff will collectively vote to pick one charity for donation. Regardless of the outcome, you will certainly have helped to inform people along the way.

An interesting snippet

Stevens Johnson Syndrome was first identified in 1922 by Dr.'s Stevens and Johnson. In 1948 George Orwell that most famous or infamous writer was hospitalized with TB. Streptomycin use was in it's infancy and as yet was still only available in the United States. A batch of this anitibiotic was especially ordered for Mr. Orwell and as soon as it arrived at the hospital he was started on a regimen of Streptomycin treatment. Initially he seemed to be responding well but developed a severe reaction which was never named. His skin fell off, his nails fell off, he had blistering of the mucus membranes and for years afterwards suffered terribly with his eyes......................I'm not a doctor but it makes me think!!!!!!!!!

SJS Awareness Ribbons

Continuing our series of ribbons designed by Elisabeth. If you would like a copy of the template please feel free to contact me.

Awareness Tip: Please share your story with as many people as possible. If you would like to use the contact link on the left side or email me at milnesjs@shaw.ca, I would be happy to publish your story as part of our Guest series.