Sjögren’s Syndrome Foundation Aims to Shorten Time to Diagnosis

The Sjögren’s Syndrome Foundation (SSF) has recently launched a campaign with the goal of reducing the time to diagnose Sjögren’s by 50% within 5 years. Sjögren’s Syndrome, a systemic autoimmune disorder in which the body’s immune system attacks its own moisture-producing glands, affects as many as 4 million Americans with an estimated additional 3 million more cases undiagnosed. [Read more…]

An SJS Public Service Announcement from Julie McCawley

Julie McCawley developed Stevens Johnson Syndrome (SJS) at the age of 10 months. It was a harrowing ordeal for her single mother, Jean McCawley, as she had never heard of this disease and was unable to find any information about it. She felt alone, helpless, and afraid as her daughter fought for her life. [Read more…]

Lea Morrison: A Winner on Many Levels

At age 32, Lea Morrison, had recently gotten married and was looking forward to starting a family with her husband. At this time, Lea did not know that over the next four years she would learn just how important her eyes were in communicating deeply with those around her. It was during this year of her life that she received shocking news from her doctor: Lea was diagnosed with chronic myelogenous leukemia (CML). [Read more…]

World Sight Day in October

If you ever needed a platform from which to take action on behalf of eye health, here is a wonderful opportunity to become involved in this effort. October 13, 2011, marks World Sight Day sponsored by Vision 2020, a global initiative seeking to eliminate avoidable blindness. [Read more…]

A Call for Sjögren’s Syndrome Ambassadors

Sjögren’s Syndrome is certainly not a condition that most people have heard about, yet it affects the lives of many of our patients here at BFS. The recent announcement by tennis star Venus Williams that she has been diagnosed with Sjögren’s Syndrome may help to increase awareness of this disorder. Williams sought treatment for many of her symptoms, which included joint pain, hand swelling, dry eyes and mouth, numbness, fatigue, but received numerous misdiagnoses before now. Estimates indicate that nearly four million Americans have Sjögren’s, yet only one-fourth of them have been accurately diagnosed. Williams’ experience and these statistics highlight the great need for increased awareness and improved diagnosis of this life-changing condition.

Sjögren’s Syndrome is a chronic autoimmune disease that is characterized by dry eyes and dry mouth. This condition is systemic and can cause dysfunction in other organs as well, such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Extreme fatigue and joint pain may also be present. Although there is no cure for Sjögren’s, symptoms can be managed through medical treatments and lifestyle adjustments to improve quality of life and prevent complications.

Currently, the Sjögren’s Syndrome Foundation is reaching out to local communities across the U.S. to promote awareness of this disease. You can help make a difference in your own community by becoming an Awareness Ambassador. If you are interested in learning more about this exciting program, please contact Kathy Ivory at the Sjögren’s Syndrome Foundation (by phone at 800-475-6473, extension 213, or by email at kivory@sjogrens.org). Help spread the word and make Sjögren’s Syndrome a household name.

 

BMT Infonet T-shirts

Here’s a great way to show your support for a cause that is important to so many members of our BFS community. BMT Infonet’s new Got Marrow? And Stop GVHD t-shirts are sure to spark conversations about transplantation wherever you go. [Read more…]

Biking for BFS!

Sometimes in life, an event occurs that is so profound it can bring about a sense of personal strength and courage that you didn’t even know you possessed. It might lead you toward trying something you never even imagined you would be capable of accomplishing. Ralf Jarchow, a lawyer from Brampton, Ontario, exemplifies how a life-changing event can be the inspirational spark for reaching far beyond the norm in order to help others. [Read more…]

Helen Keller Day

Helen Keller is known as a woman of great courage, wisdom, and perseverance. After developing a fever at 18 months which left her blind, deaf, and mute, Keller went on to learn to speak and to become one of the greatest advocates for the blind. To this day, her words and actions are still an inspiration to many and live on through service projects throughout the world. [Read more…]