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

Off to Boston

Tomorrow we leave at 4.30am for our flight to Boston. The actual travel is so stressful and Ian has been begging me all day not to go. He hates the journey and it is so hard on his eyes as the air in the cabin is so dry. His eyes are usually swollen for two days afterwards.

Hoping I can cheer up by tomorrow to keep him motivated......Don't know how much longer I can keep going with this reactive, crazy, schedule of eyedrops, school, appointments and travel. SJS Sucks!

www.milnesjs.com

In Memory of Judith Cronmiller

Judith Matthews Cronmiller, 64, of East Lansdowne, a registered nurse, died Saturday (26th Sept) of complications from Stevens-Johnson syndrome, a skin disease, at Crozer-Chester Medical Center in Upland. Our hearts, prayers and condolences go out to Judith's family.

This is why we have to keep spreading the word. Every day we hear of new patients and quite frankly enough is enough! We have just set up a cause on Facebook so if you are on Facebook, then please take the time to become a member:

Support the Milne Stevens Johnson Syndrome Society.

Our short time goal right now is to send Ian Milne (11 yrs) to Boston, Oct 2009, for urgent refitting of his Ocular Surface Prosthetic Lens. This device is crucial for pain control / maintaining vision. Donations can be made at: www.milnesjs.com

Our overall mission however, is to inform as many people as possible about this horrific condition so that no one else dies or has to live the life that these survivors endure. Please support us now and join our cause.