Back to School

Well it's getting close to that time of year where our SJS kids must return to that annual germ fest known as school. Given Ian's SJS episode last week, I am especially concerned about hygiene in the class and the propensity for illness that it poses. So if you are a parent, regardless of where you live in the world, PLEASE do not send your kids to school if they are sick, especially with the H1N1 virus in our midst. Now is the time to re-train students about the importance of frequent hand washing. SJS does not discriminate and the simplest most effective way to prevent it happening to our children, is to stop the spread of viral or bacterial infection thereby limiting the need for drugs that cause SJS.

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Ian's eyes

Very depressed today. Ian had been complaining for the last few weeks that the vision in his right eye is not as good as it had been after his cataract surgery. His ophthalmology exam today showed more blood vessels growing into the cornea which causes cloudiness or blurriness. This photo is not of Ian's eye, but demonstrates corneal neovascularization perfectly.

Follow up appointment in 6 weeks to determine if the vessels are advancing further into the cornea. Too scary to contemplate the loss of vision right now! On a happier note though, we are making progress with the serum drops and Ian's ophthalmologist will contact the hospital in Vancouver to have the blood drawn and spun.

For more information about Ian and Stevens Johnson Syndrome please visit:

www.milnesjs.com

Spent some time this weekend talking to the families of people who died from SJS/TEN. Puts everything into perspective and helps me to realize just how lucky Ian is to have survived. Makes me angry though, that not only were those deaths senseless, they were an unnecessary endurance of the most agonizing form of death imaginable. You cannot imagine that something so horrible even exists from taking medications as directed.

For information about SJS visit www.milnesjs.com

SJS Awareness

Great Clip from Julie McCawley.

For more information visit www.milnesjs.com or www.sjsupport.org

Serum drops in Canada

WOW - A huge thanks to a fellow SJS patient in Vancouver who read my previous post regarding the Autologous Serum Eye drops. They've been having them made in Vancouver the whole time that we have been chasing our tails down to Miami.

I'll call Ian's doctor on Monday and have her follow up, so here's hoping. As soon as we have everything arranged, I'll let you know how it goes.

To contact us or for more information about SJS visit:

www.milnesjs.com

Autologous serum eye drops

Here is my wish list for the day: To get someone on the phone who cares enough to help rather than "passing you on"

The best eye drops to use for dry eye, are autologous serum eye drops. These are eye drops made from the patients own blood and contain all the proteins, nutrients and antibodies of natural tears. Up to now we have been travelling to Miami to have them made so this makes them ridiculously expensive with the cost of flights, hotels etc. Recently I found a Canadian medical article about the drops and I thought this was perfect, because now we could simply have them made locally. I contacted the author of the article, who was very helpful, but since then I have been on this "merry-go-round" of phone calls, constantly being passed from one person to the other. I think I have spent over 20 hours for the answer to one simple question. This is the side of a "'rare" disorder that no-one sees, the hours and hours of red tape and bureaucracy for every little thing - it makes things so unnecessarily stressful. The worst part is that I usually end up being passed back to the the people I called in the first place. If you would like to read the Canadian article, you can find it at:

http://article.pubs.nrc-cnrc.gc.ca/RPAS/rpv?hm=HInit&calyLang=eng&journal=cjo&volume=44&afpf=i09-015.pdf

SJS Awareness

August is SJS Awareness Month

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