Wednesday, September 30, 2009
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:
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.
Sunday, September 27, 2009
Heading to Boston
Ian is heading to Boston on October 4, 2009 for emergency refitting of his scleral prosthetic lens. This device is essential for pain relief and maintaining vision. Donations are urgently needed at this time to help with costs. For more information please visit the Milne Stevens Johnson Syndrome Society at: Wednesday, September 16, 2009
Cornea made from Tooth
Implanted tooth helps blind US woman recover sight
A 60-year-old US grandmother, blind for nearly a decade, has recovered her sight after surgeons implanted a tooth in her eye as a base to hold a tiny plastic lens, her doctors said Wednesday.
Sharron "Kay" Thornton, from the southern US state of Mississippi, lost her sight in 2000 when she came down with a case of Stevens-Johnson syndrome, a rare disease that scarred her cornea, according to the University of Miami's Bascom Palmer Eye Institute.
For patients whose bodies reject a transplanted or artificial cornea, this procedure "implants the patient's tooth in the eye to anchor a prosthetic lens and restore vision," said Thornton's surgeon Victor Perez.
In the procedure -- which was pioneered in Italy but was a first in the United States -- the medical team extracted Thornton's canine or "eyetooth" and surrounding bone, shaved and sculpted it, and drilled a hole into it to insert an optical cylinder lens.
The tooth and the lens are implanted under the patient's skin in the cheek or shoulder for two months so they can bond, then they are carefully implanted in the center of the eye after a series of procedures to prepare the socket.
"A hole is made in the mucosa for the prosthetic lens, which protrudes slightly from the eye and enables light to re-enter the eye allowing the patient to see once again," read an Eye Institute statement.
Following a series of operations, medical personnel removed the bandages from Thornton's eyes two weeks ago.
She was able to recognize objects and faces a few hours later, and 15 days later she was able to read newspapers, the Eye Institute said.
"I'm looking forward to seeing my seven youngest grandchildren for the first time," said Thornton.
I'm actually surprised that this procedure has not been performed in USA prior to this as it has been available in many countries for a couple of years now. Even had one lady in Ireland who had successful results. Have a look at this video of a Stevens Johnson Syndrome Patient from England:
http://www.YouTube.com/watch?v=L4vE7QlbVakNominate SJS Foundation
Please nominate The Stevens Johnson Syndrome Foundation (Westminster, Colorado) for the Christies Cookie Charity Giveaway. The most nominated charity will receive a check for $10,000. The runner-up wins $5,000, and the next 10 will receive $1,000 each. http://ilovechristiecookies.com/contest/form.asp
Sunday, September 13, 2009
Friday, September 11, 2009
Remembering September 11.
Thoughts to everyone touched by the tragedy of 9/11. I'm reaching out today to any survivors who experienced SJS cases due medications received as part of their treatment.
Thursday, September 10, 2009
Acupuncture for dry eye
3rd Acupuncture session today. I'm in awe of Ian with needles in his eyelids. No progress yet. We'll see how today goes.
Saturday, September 5, 2009
Accupuncture for dry eye
Ian had acupuncture this week. 12 needles in/around his eyes and 8 around his body. What an incredible 11 year old boy. I forgot to bring my camera, but he has another appointment next week so I will try to post some photo's after the next session. Ian really is my hero!
No results yet but I will keep you up to date.
Tuesday, September 1, 2009
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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