Raising the Profile of SJS – Awareness and Treatment

Crowdrise-LogoAnyone who is a survivor of Stevens Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TENS) will tell you that one of the toughest challenges that they faced when diagnosed was the lack of awareness of SJS – within the medical community and beyond.

Due to the rareness of SJS (it strikes approximately 1 in 250,000 people in the United States annually) patients can feel isolated and alone as they cope with the lingering effects. Many never get the opportunity to meet other survivors.

Over the past five years, we at BFS have seen, first-hand through our patient networking efforts, how survivors struggle with their post-diagnosis physical and emotional scars and how they become crusaders in order to raise the profile of this life-threatening condition.

BFS provides emotional support and treatment to patients and their families during SJS Care Week, which will be held on August 4 – 8, 2014. The goal for our 5th consecutive gathering of SJS patients is to support the ongoing care of patients with history of SJS/TEN who are currently wearing BostonSight® PROSE devices.

SJS Care Week brings survivors together to receive sight-saving treatment and much-needed peer-to-peer support. Participants travel from all over the world for the event; for patients who live at a distance, BFS has arranged for discounted hotel accommodations, and there is financial assistance available to reduce the cost of travel and accommodations for those who qualify. Once again the Walker Center will host our annual barbecue, always a great opportunity for members of our extended community to catch up with old friends and make new ones; there will be additional opportunities to gather and share experiences throughout the week.

The most beneficial thing that each of us can do for the community of SJS survivors is to become advocates for awareness, for treatment and for understanding.  Here’s a simple way to spread the word:

Participate in an exciting social media awareness/fundraising campaign through CrowdRise.   Raise the profile of SJS while you reduce barriers to treatment for the ocular implications of SJS.  Let your friends and family know about our CrowdRise campaign by forwarding the link (https://www.crowdrise.com/SJSCareWeek)to everyone that you know.

For other ways to raise awareness of SJS, please visit the SJS Foundation website (www.sjssupport.org).

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