Update

Well it's been a long time since my last post. It's been a rollercoaster ride of wonderful ocular stability to complete and severe inflammation causing regrowth of symblepharon (eyelids adhering to eyes). Add to that, the annual issues with school support and quite frankly it's been enough to make me say: OK - You Won! and sink into a deep black hole. After 9 years it's exhausting and has sucked the life out of all of us.

Finally though it's time to regroup and get back in the ring. Ian's eyes are too important to give up now....There are too many others every week who are going through SJS/TEN and how can we, in good conscience, support them if we don't keep pushing through.

So on that note, it's time to start getting organized for next year. We need to take Ian and at least 10 other kids to Boston, so we are working on our strategy. Corporate sponsorship is one option that we are looking at, so if you are a in a position of giving, please support us to help these children maintain their vision. For information about Stevens Johnson Syndrome please visit www.sjsupport.org or www.milnesjs.com you can also find information on Wikipedia at http://en.wikipedia.org/wiki/Toxic_epidermal_necrolysis

SJS Kids Week

Well, it's been quite the couple of weeks, with a very successful trip to the Boston Foundation for Sight for Ian. For the first time in 9 years his eyes are deemed to be stable, so we will take that with gratitude. While we were there we participated in the first Annual SJS Kids Week and it was a wonderful opportunity to meet other children and parents so that no-one felt so "alone". Some very therapeutic discussions and lots of fun too. The Staff at the Boston Foundation for Sight did an awesome job, but the real credit goes to Dr. Johns whose original idea was the basis for the whole event. Please visit the Boston Foundation for Sight for more information about the event and for some fun photos.

Thank you to the Stevens Johnson Syndrome Foundation for the wonderful T-Shirts but more importantly for the incredible work they are doing. August is SJS month so please spread the word - you could save a life!

SJS story on Mystery Diagnosis

Julie McCawley's story will air on Mystery Diagnosis on Discovery Health channel March 22, 2010. Please check your local listing for the time in your area!

To read Ian's story visit 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

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.

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

SJS Awareness

August is SJS Awareness Month

www.MilneSJS.com

Please spread the word by sharing our website