Stevens Johnson Syndrome: What Is It and Why Should We Be Informed?

Since many patients arrive at BostonSight for PROSE treatment to alleviate persistent ocular symptoms from Stevens Johnson syndrome, we see firsthand their daily struggles with the aftermath and feel strongly about our dedication to SJS support, advocacy, and education.
[Read more…]

Stevens Johnson Syndrome Foundation Asks for Support for Mandatory Reporting System of Drug Reactions

SJS ribbonThe Stevens Johnson Syndrome Foundation is reaching out to our BostonSight® PROSE community to ask for help with promoting a citizen petition to the Food and Drug Administration (FDA) for a Mandatory Reporting System of Adverse Drug Reactions. This is a great and easy way to add your voice in support of a cause that is important to so many in our BFS community whose lives have been impacted by Stevens Johnson Syndrome (SJS). [Read more…]

Celebrate May: It’s Healthy Vision Month

hvm_home_imageThere is much to celebrate in May: Memorial Day, Cinco de Mayo, and Mother’s Day probably come to mind quickly. What you might not know is that this month is Healthy Vision Month, a health observance established by the National Eye Institute (NEI), one of the National Institutes of Health (NIH). Healthy Vision Month is designed to elevate vision as a health priority for the entire nation.

[Read more…]

Help Make August SJS Awareness Month in Your State

SJS ribbonAs many in our BFS community know, Stevens Johnson Syndrome (SJS) can be a devastating diagnosis with lifelong consequences. Jean McCawley, founder of the Stevens Johnson Syndrome Foundation, knows this firsthand as she held vigil beside her young daughter Julie’s hospital bedside during her struggle to recover from Stevens Johnson Syndrome. Alone and afraid, Jean was unable to find information or support during those early days. She vowed that no parent should have to face this devastating illness without help and has devoted herself to educating, supporting, and advocating for patients and families who have been touched by Stevens Johnson Syndrome.

[Read more…]

Advocacy 101

Advocacy. Not such a big word. We all know what it means. Or do we, really, in terms of what it can do for us and others? In particular, what does it mean for those who have experienced serious vision-health challenges?

[Read more…]

FDA Issues Acetaminophen Product Warnings for Stevens Johnson Syndrome Risk

The timing of a recent Food and Drug Administration (FDA) announcement regarding the risk of Stevens Johnson syndrome (SJS) with acetaminophen products couldn’t have come at a more opportune time.  August is Stevens Johnson Syndrome Awareness Month and BFS is committed to help raise public awareness of this life-threatening disease. [Read more…]

Rare Disease Support Resources and Rare Disease Day 2013

A rare disease is defined as one that affects fewer than 200,000 Americans. Nearly 7,000 rare diseases impact the lives of almost 30 million Americans. Here at BFS, a number of these rare diseases are very familiar to us and to our patient community. [Read more…]

Olympians with Sjögren’s Triumph and Spread Awareness

The United States just concluded its most successful Olympics to date with a total of 104 medals, 46 of them gold–more than any other country. As I watched the games from my comfy couch, I shared in the tears and triumphs of our U.S. athletes. But two athletes in particular stood out for me:  tennis player Venus Williams and soccer team member Shannon Boxx who have both been diagnosed with Sjögren’s Syndrome. [Read more…]

Proclamations Proliferate for Stevens Johnson Syndrome Awareness Month

We’ve wrapped another fabulous SJS Kids week here at BFS just in time to kick off Stevens Johnson Syndrome Awareness month. Thanks to help from you and from dedicated members of the Stevens Johnson Syndrome Foundation, state proclamations are being approved across that nation to declare August as Stevens Johnson Syndrome Awareness month. [Read more…]

A National Summit on Eye Health: June 20 in Washington DC

Next week, Prevent Blindness America will host “Focus on Eye Health: A National Summit” in Washington, DC. This event will serve to launch the newly revised public health data on vision and eye health. This summit aims to bring focus to eye health at a critical time of severe reductions in funding for eye health care, research, and prevention. [Read more…]