|
Events for Awareness
|
|
Its spring time and now is the time of year to start planning for SJS awareness month coming up in August. Please take the month of August to spread awareness about Stevens Johnson Syndrome the importance of recognizing allergic reactions immediately.
Here is a list of ideas for spreading awareness in your community:
Wear a blue ribbon everyday.
Distribute fact sheets at community gatherings.
Visit the SJS Shop online.
Inform your co-workers, neighbors and friends about SJS.
Place a link to the SJS Foundation in your email signature.
Join the SJS Foundation Cause on Facebook.com.
Contact your local media. Send them an online tip informing them of SJS Awareness Month.
Share a picnic with those in your community who have experienced SJS.
Join a toastmaster organization and speak out about your experience with SJS.
Write to your Elected Officials.
Visit www.sixdegrees.org and create an SJS charity badge for your blog, myspace, website ect.
Host a fundraising event for the SJS Foundation (concert, walk, bake sale ect). Please contact Anne Farrell at ataylorfarrell@gmail.com for information about how to do so.
Please let us know what you are doing for SJS Awareness Month. Contact with what your plans are.
To view full article please: [click here]
|
|
|
|
Our DailyMeds
|
|
A novel by journalist Melody Peterson of the New York Times is taking pharmaceutical companies by storm, stating that the corporate machine entered the pharmaceutical industry hooking millions of Americans on daily prescriptions through effective marketing. Our Daily Meds was released in March 2008.
Reviews can be found at: [site 1], [site 2]
|
|
|
Denver Doctor with a Vision
By, Anne Farrell
|
|
Over the past two years a doctor in Colorado has begun taking huge steps towards helping Stevens Johnson Syndrome patients save their vision. Dr. Darren Gregory, a Denver Cornea Surgeon has treated 8 patients to date, and while this is not a significant number of results the outcomes have been amazing with the majority of the patients treated have experienced little dry eye syndrome or vision loss thanks to this revolutionary treatment.
Dr. Gregory uses a less commonly known procedure involving using amniotic membranes from childbirth as a protective layer over the eyes while patients are experiencing SJS. Amniotic membrane is known for its strong anti scarring and anti inflammatory abilities and helps the eye to heal and suppress inflammation.
Dr. Gregory began using this method after becoming frustrated with the results of traditional SJS treatment. He states that the research involving the procedure has existed for 6 years but until recently it has been rarely used in common practice.
Over the next several years Gregory hopes to refine the techniques used in the treatment as well as create criteria for outlying patients who will receive it. If you are interested in seeking this treatment Gregory recommends referring your questions to one of his upcoming journal publications about the topic. An article will be published in "The Ocular Surface" and he is in the process of receiving approval for the Steven's Johnson Syndrome Foundations use online. Not all patients are good candidates for this treatment and Dr. Gregory himself does not have the resources to provide consults at this time.
|
|
|
|
|
Awareness Letters
|
|
Since 2003 the month August has been declared Stevens Johnson Syndrome awareness month in many states across the country. Each year, new requests for declarations must be sent to local governments to ensure that this tradition continues. Last year 9 states recognized August as the official awareness month and it is our hope to reach all 50 states, which can only be accomplished with your help.
Please write to your governor on behalf of the SJS Foundation requesting that your state honors the families and patients of Stevens Johnson Syndrome with a month of awareness in their honor. A sample letter is available online at: here
|
|
|
|
Genetic Research
|
|
Researchers at Duke University Medical Center have for the first time found a possible connection between Stevens Johnson Syndrome and a genetic marker.
The study conducted examined the effect of Tegretol on patients with Chinese ethnicities. It is unknown at this time if similar testing will be possible for other drugs or with other ethnicities.
Within the study it was determined that all Chinese patients with reactions to Tegretol shared the genetic variant human leukocyte antigen B* 1502. HLA markers are essential in the immune systems ability to recognize and protect against foreign invaders. When a HLA marker recognizes a drug as an invader that is what creates an allergic reaction like SJS or TENS. Most commonly HLA markers are used to determine bone marrow matches.
Duke researchers will continue to look for connections between genetic variants and occurrences of reactions with the hope that one day they will be able to screen a patient before giving them a medication to determine if they will have a reaction.
For more information go to: [click here]
|
|
|
High School Seniors,
spread SJS Awareness!
|
|
Congratulations!
Today is your day.
You’re off to Great Places!
You’re off and away!
Jeanne Eggleston of Westminster, Colorado has volunteered for the
Stevens Johnson Syndrome Foundation since she was 8 years old. She started by stamping and folding newsletters and handing out SJS fact sheets at local fairs. Later she worked in the office filing and answering phones. She is president of HOSA (Health Occupation Students of America) at Westminster High School where she recently gave a presentation on SJS and TEN. Jeanne is also receiving her certified nursing assistant certificate and interned at a local nursing home. Jeanne will be attending nursing school where she will study to
become a registered nurse.
Congratulations Jeannie!
|
|
|
|
