Sometimes Patients Teach Doctors

Doctor talking to patientFrom PROSE patient Mary Dalessio:

I have had many issues with my eyes over the 7 years since I received a stem cell transplant in 2004. The difficulties I faced included contracting Graft versus Host Disease (GVHD) which affected many systems in my body including my eyes. At first, my ophthalmologist attributed the problems to cataracts, and so I had cataract surgery in both eyes in 2007. This same year I also had an episode of spontaneous corneal erosion, in which I felt like I was having the worst migraine of my life. [Read more…]

My SJS Care Week 2014

This post was written by Mariam, an SJS survivor from Chicago. She has been attending SJS patient events at BFS for four years. 

survivors with proclamation at BBQI arrived in Dedham, MA around four in the afternoon, exhausted and worn down from my long trip from home. We checked in, dropped off our luggage, and waited. That period between arrival and meeting other SJS patients and their families is one filled with anticipation. I sat there on my bed thinking about how our first meeting and how the rest of the week would play out. Who would I meet? Who did I already know? And most importantly, what could I learn this time around? My family and I have been to four SJS Care Weeks and with each trip I left with something new. I left with new friends, new support systems, new tips and tricks concerning lenses and general medical care. When the time came, I got up and walked down the hall, nervous about what I would see behind the “SJS CARE WEEK” door.  I did find something when I opened that door- and that was love.

[Read more…]

Coming Soon: SJS Care Week at BFS!

We are so excited for our favorite week of the year: SJS Care Week! Beginning on August 5, Boston Foundation for Sight will welcome our Stevens-Johnson Syndrome (SJS) patients and their families for a week of medical treatment and social support.

[Read more…]

National Symposium for Blood and Marrow Transplant Survivors

Symposium-Banner_2014_webIf you or a loved one is a survivor of a bone marrow, stem cell or cord blood transplant, please join us for a weekend of learning, sharing and celebration. Celebrating a Second Chance at Life, hosted by the Blood and Marrow Transplant Information Network (BMTinfonet.org), is a two day event, with expert presenters from cancer centers all over the country. This year’s symposium will be held in East Rutherford, NJ, about 10 miles from Manhattan.

[Read more…]

Emotional Empowerment

There’s no way around it, many patients with corneal disease struggle emotionally.  And how could it be otherwise, since symptoms can negatively impact many quality of life issues such as ability to work, socialize, be a family member or just enjoy general leisure time?  Ultimately, this impact can lead to some tough emotional burdens like depression and anxiety.

[Read more…]

Giving Thanks for Hospitality Homes

HospitalityHomesThanksgiving is traditionally a time to give thanks and reflect with gratitude on the many blessings in our lives. We gather with family and friends in celebration as we share a bountiful feast. Here at Boston Foundation for Sight we are thankful for partner organizations that help us fulfill our mission of restoring sight and transforming lives by treating complex corneal disease. [Read more…]

Proper Hygiene and Device Care Critical for Preventing Infections

Last August, we highlighted new research in which scientists are uncovering novel ways to fight eye infections. In that post, we touched on some general guidelines for preventing infections and recommended some basic hygiene practices. However, this topic is so important to our community members who have serious eye conditions and use PROSE devices, that this week we are covering the topic of eye infections and prevention in more detail. [Read more…]

Bailey Butler Lives a Full Circle of Life

Life rarely follows a straight path. Twists, turns, and unexpected surprises of all kinds appear along the way. Meet one of our patients whose life journey is taking her in a full circle:  Bailey Butler.  [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…]

The Sjögren’s Syndrome Foundation Needs Your Stories

If you or your family has been affected by Sjögren’s Syndrome, please take a few minutes to share your story with the Sjögren’s Syndrome Foundation (SSF) and lend your voice to their advocacy efforts as they testify on Capitol Hill next week. [Read more…]