This is what I have been hoping for over a very long period of time. Granted it still does not specifically address eye issues caused by Neurofibromatosis and other brain disorders but at least it is a start in the right direction.
Thank you medical ophthalmic community! Keep it coming!!!!
For those who are new to NF2 or do not know, dry eyes is a # 1 problem with NF2 that rates right up there with hearing loss. If it is pretty much inevitable to become rendered deaf by NF2, one most certainly does not want to become blind on top of it!! Yet, partial blindess or vision impairment often becomes the case - there are a rare few that have become deaf and blind.
Please visit http://hollyalonzo.com/
to read Holly Alonzo's blog about living life blind and deaf. Better yet, order her book "Never Giving Up Hope" to learn the challenges of becoming completely blind and then the fear of losing all your hearing little by little until it is gone. It is a REMARKABLE read and will really make you rethink the little problems in life that you think are big problems. Her story will definitely make you change your perspective!
Now back to the eye issues caused by NF2. As I said, dry eyes are a very common problem among NF2 patients. It stems from damage incurred either through surgery, radiosurgery (as in my case) or by the tumors themselves getting too big and invading the facial nerve. Through any of these causes, the facial nerve becomes damaged disrupting the tear production process or preventing the eyes from fully closing to hold in their moisture. Several people have lost sight in the eye affected by facial paralysis because the cornea became too dry and scarred.
Luckily, my ability to form tears came back within 3 years after my first brain surgery. Before that I could not even cry which left me with terrible head pressure and headaches in a time of dire grief (passing of a loved one).
Although I was lucky to regain tear production, I still cannot fully close my one eye leaving it to get dried out in environments of intense dry heat, wind, or when sleeping at night. Hence, I ALWAYS have artificial tears on me and use gel drops with a mask at night. Some people go as far as taping their eye shut at night.
So this is wonderful that the medical community is taking notice of this problem (even if it is spurred on by a the larger problem in the general community, it still benefits us).
My hope is that a spinoff affect will happen leading doctors to pay more attention to these serious and disabling vision complications caused by brain tumors and other head tramua - namely Nystagmus (jerking eyes unable to focus), Oscillopsia (bouncing eyes like seeing through a handheld camcorder), and double vision (related to eye movement and nystagmus).
Found on the website "Medical News Today"
http://www.medicalnewstoday.com/articles/190117.php
Best And Brightest Gather To Solve The Dry Eye Development Enigma
Main Category: Eye Health / Blindness
Article Date: 27 May 2010 - 10:00 PDT
www.healingtheeye.com
The Dry Eye Summit, which attracted hundreds of industry leaders to the Harbor Beach Marriott in Ft. Lauderdale the day before the opening of ARVO, spurred discussion on innovation and collaboration among ophthalmic clinical researchers, scientists, regulators, pharmaceutical executives, FDA officials and venture capitalists. Top experts in the field packed into the venue to address the complexities of the drug development process for dry eye.
"There are an estimated 100 million people who suffer from Dry Eye. It is a complex disease with multiple underlying etiologies and currently there is only one approved prescription drug, leaving a significant unmet need among patients. By bringing together the best and brightest minds across a myriad of key business and scientific disciplines, with a passion for innovation, we hope to move the industry forward," said Stuart Abelson, President & CEO of Ora, Inc., a lead sponsor of the Summit.
The full-day Summit included presentations from medical professionals, statisticians, clinical leaders and others. In addition to the dozens of speakers Wiley Chambers, MD, Acting Director for the FDA Center for Drug Evaluation and Research presented and participated in several panels at the Summit. "We appreciate the FDA contributing the time and participation of a key resource. Dr. Chamber's insight and accessibility were important to provide guidance on regulatory matters," Abelson added.
After a review of the history of dry eye by Dr. Michael Lemp, Dr. Oliver Schein delivered an epidemiological perspective of the disease and presented the fact that dry eye is estimated to affect 20% of the general population in some form. Dr. Stephen Pflugfelder went on to discuss the role of inflammation in the study of dry eye, and Dr. Reza Dana highlighted the challenges of using animal models to predict drug efficacy. A second group of researchers -- comprised of Dr. Gail Torkildsen, Dr. Darlene Dartt, and Keith Lane -- took a deep dive into the biological mechanics of how malfunctions of the complex tear production and blink systems can lead to Dry Eye.
Regulatory and clinical leaders described the importance of careful clinical trial design in drug development and the hurdles to appropriate formulation in eye drops, including safety, sterility and manufacturing concerns. Lester Kaplan, PhD Former Executive VP R&D, Allergan and Executive Chairman for Aciex Therapeutics moderated a panel discussion/conversation on establishing clinically relevant endpoints and general criteria for inclusion/exclusion for Dry Eye subgroups.
During the clinical sessions, George Ousler, Director of Dry Eye for Ora, Inc. discussed a range of technology-based research solutions, including the Controlled Adverse Environment (CAE™), to address the challenges of studying Dry Eye amidst a myriad of environmental confounds. Dr. Jerry D. Cagle, Former Senior VP of R&D and Chief Scientific Officer, Alcon, moderated a discussion with Dr. Wiley Chambers, Dr. Mark Abelson, George Ousler, and Dr. Stephen Pflugfelder on lessons learned across dozens of Dry Eye development programs and regulatory application processes.
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