Hot Dog Sale

Well the weather was not very cooperative for our hot dog sale at the weekend. However, it was still a successful event. We managed to hand out over 200 Stevens Johnson Syndrome Fact sheets. Bottom line: we need more people to know about SJS

www.milnesjs.com

SJS goes to the White House

DENVER Coloradoan November 16 2009 -

Michelle Obama encouraged 80 Denver-area high school girls Monday to not only seek mentors, but to fill that role themselves. Julie McCawley is already living that message.

McCawley, a Westminster High School junior who shared a table with the first lady at a Governor's Mansion luncheon, is visually impaired because of an adverse drug reaction as an infant. She now has a foundation that aims to educate people about adverse drug reactions and a condition known as Stevens Johnson Syndrome.

"She was amazed by it," McCawley said of her discussion with Obama about her work. "She had never heard of something like this before, and she asked if she could keep the fact sheet."

Congratulations Julie - You have taken SJS awareness to a whole new level. For pictures and information about the event Read the full article

Vaccinations

There has been quite a stir lately as to whether or not we should vaccinate against H1N1, but for many SJS survivors the issue is particularly hard, because another SJS reaction to any of the ingredients cannot be predicted...........as such we have chosen not to give the vaccine to Ian because when we consider the "RARE" adverse reactions, that word "RARE" means nothing to us.

I've been reading the many articles doing the web rounds every day but the video below is easy to understand and just makes sense to me generally. If you prefer to read the article visit:

http://articles.mercola.com/sites/articles/archive/2009/11/14/Expert-Pediatrician-Exposes-Vaccine-Myths.aspx

Remembering all who fought for our freedom. Thinking also of the many soliders who had SJS / TEN from drugs used during treatment of their injuries.

For more information about SJS / TEN www.milnesjs.com

BBQ Fundraiser

Busy preparing for our upcoming "Hot Dog BBQ" outside the Langford Walmart on Saturday November 28 2009 from 11 a.m. - 4.00 p.m. If you live in the Colwood / Langford area, we need volunteers to help with setup, cooking, sales and teardown. Donations are urgently needed at this time. For more information visit:

www.milnesjs.com

Ongoing scleral lens challenges..

We are all totally frazzled since coming home from Boston, hence the lack of postings. I kid you not when I say that I have been removing / inserting that lens nearly every 30 minutes since October 17. It does not sound bad but it interferes with everything.

The issue is not the lens, because in reality it's a piece of plastic that cannot change. The issue is obviously Ian's eye. Friday 6th @ 7pm the courier arrived with a new lens, but the eye was too inflammed to try it so we waited until yesterday. Fine in the morning, but problems in the afternoon. Ian was devastated - almost the last straw as he had convinced himself that everything would be fine. Last night however, things went really well and so far this morning the lens has been in for an nearly two hours now and no problems yet. Keeping our fingers crossed.

For more information visit www.milnesjs.com