Saturday, August 20, 2011

Thank you!

Thank you to everyone that came out and walked for 
Stevens - Johnson Syndrome Awareness.
We appreciate your support!

Thank you also to our sponsors!

City of Arvada
Eldorado Natural Spring Water
Embroidery by Design
Krispy Kreme Doughnuts
Muttleys Maid
Party City
Rejuvenation Nutritional System
Wylaco Supply Company

Sunday, July 17, 2011

SJS/TEN Awareness Walk

August is Stevens - Johnson Syndrome Awareness month!
Please join us for a walk around the lake as we spread the word about SJS/TEN
Meet other SJS Survivors and enjoy a relaxing day in beautiful Colorado

Saturday August 13th at 10am to 1pm

Lake Arbor Park, Arvada, Colorado
 6400 Pomona Dr, Arvada, CO 80003
See mapquest link for directions:

$10.00 registration donation to:

SJS Foundation
PO BOX 350333
Westminster, CO 80031

 T-Shirts are available for $5.00 each in limited sizes

We will also have handmade SJS Awareness Angel Pins.
These pins were made by SJS survivors and SJS volunteers and are available for $1.00 at the walk.

Rooms available at the Westminster Hilton Doubletree Hotel
for the nights of Aug 12 & 13
Located at 8773 Yates Drive, Westminster, Colorado 80031
Reservations 877 383-8277 or 303 427-4000
Ask for Stevens Johnson Syndrome Walk rate $89.00 per night
The hotel will be providing guests courtesy shuttle service to  Lake Arbor Park

Registration form:

Proceeds from the walk will be used toward research of an ocular surface device currently being designed to prevent ocular surface damage during an episode of SJS or TEN, and repair existing damage to the tear glands, cornea and ocular surface of SJS survivors.

August is SJS Awareness Month
 to view this years proclamations
please click on the link below:
 2011 SJS Proclamations

Friday, February 11, 2011


Back to school after SJS can be very difficult for a child who's life has forever changed from
Stevens-Johnson Syndrome.
Many of our children are left with life long side-effects including low vision or blindness. How do
they fit back into the school system?

Contact the principal of your child's school and tell them you would like to arrange for
an IEP (Individual Education Plan). This is a legal document that the schools must adhere
to. It will protect your child's rights and provide them with needed support in the classroom.

TVI (Teachers of the visually impaired) are employed by the school district. They will provide
your child with adaptive electronic equipment, lap top with zoom text or jaws, these are
programs to aid your child in reading. Raised lined paper and braille services are also available
as well as mobility lessons.

Be sure to include in the IEP that your child may wear sunglasses, a hat and use eye-drops throughout
the day. 
 Below is a link to more IEP information

If your child's medical condition is not considered a disability that warrants and IEP you can
then request a 504 plan. This is for children with ongoing medical conditions. This too will
protect your child's rights. Children that recover from SJS typically suffer more colds and illnesses
requiring them to lose school. Chronic fatigue syndrome is also a side-effect. Speak with the school officials about these very important subjects to protect your child and yourself against truancy charges for excessive absences.

Information about 504 plan

Saturday, January 8, 2011

Post Traumatic Stress

If you or your loved one has suffered with Stevens - Johnson Syndrome you probably have Post Traumatic
Stress as well. Every year you will remember the anniversary date of diagnosis. Watching a television  program can bring back a flood of memories or before pictures can throw you into hours of sobbing and what ifs? 

After my daughter  had  SJS I saw a doctor, hoping he could help me with feelings of anger and sadness.
My little girls life was now changed forever. How do you prepare your child for a lifetime of doctors appointments and ongoing traumatic procedures? I hoped this man would have the answers, but he didn't.
He had never heard of SJS.  I left his office even more depressed.

I just knew she wasn't the only one out there. There had to be more SJS family's. After all, there were
2 boys in the hospital with Stevens - Johnson Syndrome while she was there, but hospital staff were not
permitted to share our information with each other. I needed to find another parent and I knew the day would come that Julie would need to find a fellow survivor. One afternoon at a pediatricians appointment I wept begging him to help me. A nurse in the burn unit had told me that Julie's doctor had another case the year before. A 6 year old girl. I gave him permission to give her parents my phone number. The next day I received a call from her mother Janet.  Little did I know Janet was looking for us too. Julie's story had been on a local news station a few weeks before and Janet had seen the story. She called the station and asked for our number. They like the medical community were unable to help her.  She worked in customer service at a local store and we arranged to meet. When Julie and I entered the store Janet immediately recognized us. She raced around the counter and we hugged each other and cried. It was as if we had known each other for years. It was the beginning of a healing for me. I still have nightmares and bad memories but I know we are not alone in this.

That meeting was the beginning of the SJS Support Group. I'm not saying don't seek out a therapist
but consider finding a support group . Our online support group has been a wonderful resource. We have parents, survivors and we have a bereavement support group as well. If you haven't spoken with other survivors or parents, I urge you to do so. They can offer advise, names of medical facilities and knowledgeable doctor's  information, We have numerous support group facilitators across the country and
around the world.  Don't try to go it alone. Someone is only a phone call away.
Stevens Johnson Syndrome Support Group

You can also find us on facebook: Stevens Johnson Syndrome Foundation Facebook

and also join our cause for SJS Awareness: SJS Awareness Cause

Tuesday, January 4, 2011

A new year!

Happy New Year and welcome to the SJS Foundation blog!  Join us as we continue to spread
the word about Stevens - Johnson Syndrome and Toxic Epidermal Necrolysis.  We will be announcing SJS Awareness events across the country!

August is SJS Awareness month and it is never too soon to start writing your local governor requesting a proclamation! We really need your help with this project as many states require a local volunteer make the request. We would like to make 2011 our most successful year ever!

Please read Honest Medicine

Honest Medicine by Julia Schopick offers time tested lifesaving alternative treatments
for Multiple Sclerosis, Epilepsy, Liver Disease, Lupus, Rheumatoid Arthritis and other disease.

Available on