[When patients] participate more actively in the process of medical care, we can create a new healthcare system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients. We must make this the new gold standard of healthcare quality and the ultimate goal of all our improvement efforts:
Not better hospitals.
Not better physician practices.
Not more sophisticated electronic medical systems.
Happier, healthier patients.
Charles Safron
Wow! Now that’s the spirit I’d like to see more of when I visit a doctor! Sadly, this is often not the case for me. From reading the Boston Foundation for Sight’s (BFS) post-survey Report Back to the Community, I can see that is not always the case for many of you as well.
Welcome to Connected Visions, Boston Foundation for Sight’s new blog that is completely inspired by what BFS has heard from you, our community of people living with corneal disease and their friends and family. You have been calling on us to provide more connection: connection to information, to support and to one another. Connected Visions is our response to your call!
We were proud to learn from the survey that many of you have very positive experiences with BFS and our staff , but most of you had to travel a very long and bumpy road to get here, a road that does not end when you walk out the door. Living well with corneal disease is daunting. It can seem like there are endless barriers to good treatment:
- costs
- transportation
- poorly or misinformed health care providers
- difficult-to-navigate health care systems, and
- many other physical and emotional challenges that come with managing chronic illness.
Corneal disease patients and their families often search high and low for information and support to deal with these challenges, and you conduct much of that search on the Internet. An interesting report about how the Internet can enhance a patient’s experience, e-Patients by Tom Ferguson, MD and the e-Patient Scholars Working Group, suggests that patients who are informed, involved and assertive about their healthcare are getting better results. These are empowered patients.
The report also indicates that a patient’s empowerment is related to the severity of one’s condition and their attitude toward their doctors: the more severe the health problem and the less power given exclusively to doctors, the more empowered one will be. Boston Foundation for Sight offers this Connected Visions community space to ensure that all patients and families have the tools for being empowered .
To make this forum a safe, pleasant and user-friendly experience, we ask that you take a moment to read our Terms of Use and Privacy Policy. Second only to the importance of respecting one another, is the bit about not confusing the information on this website and blog with actual medical advice.
Please understand, I am not a medical doctor. My name is Janice M. Epstein and I am your BFS Online Community Advocate, a member of the greater BFS community with a background in communications consulting and counseling. I have an undergraduate and a graduate degree, but I assure you that there is no MD near my name.
I hope you will come back here regularly and often, but more importantly, I hope you will find that Connected Visions plays a positive role in helping you and your family live well with corneal disease.
Thanks, Janice! The blog looks great and I look forward to reading all of your posts. I am sure they will be both interesting and informative.
Hi Janice
Congratulations on getting the blog going. I’m sure this is going to be a really great step towards getting BFS patients connected. I look forward to what all you have in store here!
Rebecca Petris
Thank you for this blog. I have severe GVHD dry eyes and suffer a great deal from pain and discomfort and vision impairment. I have PROSE and cannot speak highly enough about my experiences at the Foundation, but the underlying dry eye precludes them from being as good as I would like them to be, and I can’t wear them as long as I’d like.
I don’t know if this is the right forum, if you want discussion on PROSE exclusively; but I would like to hear from others who have tried alternative therapies, things like acupuncture, serums, homeopathic eye drops, barrier glasses, surgery, etc. I have come to believe that one therapy is not the total answer to dry eyes. Again, thank you for this opportunity to discuss with others; it has been empowering and comforting to share with others who are on the same the journey. I discovered this when I was first diagnosed with AML in 2004.
First, I am so glad that you found this space! You represent so many in this community who are seeking connections to more and better information. While PROSE treatment offers significant relief of dry eye symptoms for many patients, many report benefiting from additional or concurrent treatments as well. Ultimately your primary eye doctor and PROSE treatment team would best be able to answer those questions for your specific situation. Let me point you to Dry Eye Talk, an extension of The Dry Eye Zone that is a discussion forum for people dealing with dry eye. Not only can you introduce yourself to this community and join pertinent forums, but if you scroll down to the Archive: Treatments and Products, you will see what others have already posted about their first hand experiences with the treatments you are interested in learning more about. Please remember that the Dry Eye Zone, like Connected Visions blog, should never substitute for professional medical advice. Best to you and keep coming back!
It is wonderful to have a place to reach other people who may be experiencing the same thing. I have PROSE and it truly has changed my life. Unfortunately I have been told that I am one of a small percentage of patients who experience high pain from the lenses themselves due to abnormal nerve endings in my eyes. I force myself to wear the lenses because without them I can do so little. I would love to hear from anyone else who also has also received this diagnosis and how they deal with it. Thanks!