My sister, Karen, helped me out with this week’s post as her best friend from childhood is a survivor of Stevens Johnson Syndrome (SJS). Emilie is a beautiful, courageous and inspiring woman. I’ll put the link to her blog at the end of Karen’s post.
Two and a half years ago I received a phone call that my best friend was in a medically induced coma because she had something called Stevens Johnson Syndrome. I did the first thing anybody would do and looked it up on the internet. There wasn’t a whole lot of information out there but what I did see was shocking. I saw pictures of people who looked like burn victims, people who were now blind, and some had deformities. There were very few cases where patients had made a full recovery and returned to a normal life. I was scared to death.
SJS is an allergic reaction. In Emilie’s’ case the allergen is still unknown. She was severe enough to be labeled Toxic Epidermis Necrolysis (TENS), with more than 60% of her body covered in an extreme rash. She had to be admitted to the UniversityofColorado Burn Center. The doctors placed her in an induced coma for 10 days while they monitored the sloughing of much of her skin. She had 3 amniotic membrane surgeries to help her eyes heal through the process. It was the amazing doctors and their knowledge of the research that saved Emilie’s eyesight.
SJS is an allergic reaction. In Emilie’s’ case the allergen is still unknown. She was severe enough to be labeled Toxic Epidermis Necrolysis (TENS), with more than 60% of her body covered in an extreme rash. She had to be admitted to the UniversityofColorado Burn Center. The doctors placed her in an induced coma for 10 days while they monitored the sloughing of much of her skin. She had 3 amniotic membrane surgeries to help her eyes heal through the process. It was the amazing doctors and their knowledge of the research that saved Emilie’s eyesight.
Like I mentioned, there weren’t a lot of happy success stories for the survivors of SJS out there but Emily is creating her own success story and trying to spread the word to give hope to other SJS survivors. She is now a SOAR (Survivors Offering Assistance in Recover) Volunteer at the University of Colorado Hosipital’s Burn Center. She is trained to talk to burn patients and their families from the perspective of a survivor.
She also created a blog that is following her journey from SJS to Ironman. Through this blog she is trying to raise funds for the University Of Colorado’s Burn Unit so they can bring out more awareness for Stevens Johnson Syndrome.
How can we get involved?:
-Learn about SJS and share the information!
-Help Emilie with her fundraiser…it goes to a great causeJ
“Try something new outside of your comfort zone. It doesn’t have to be an Ironman by any means, but I do hope that it involves taking risks and discovering new things about yourself. Go forward with confidence and commitment. Uncover all of the amazing things you are capable of!”~Emilie
No comments:
Post a Comment