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PROSE
EYE VIEW
Boston Foundation for Sight’s monthly e-news. Welcome to our Communit y of Sight!
I S SU E 10 | Vol 5 | oc tob e r 2 014
Winter is Coming
contents
Winter is Coming
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Education and Research
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BFS Staff
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A Changed World
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Community News
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Community Resources6
2014 has flown by, and the winter season will be upon us in the blink
of an eye. As we do each year as a gift to our readers, our last PROSE Eye
View of the year will be a special holiday edition, published on December
3rd. Full of heart-warming BostonSight® PROSE patient stories and a
holiday message from our CEO, Gene Bonte, you won’t want to miss it.
With the holiday shopping season gearing up, many folks turn to Amazon for
their gift buying needs. Did you know you can do your holiday shopping and
support BFS at the same time? Simply start your shopping at smile.amazon.
com and then enter Boston Foundation for Sight as the charity of choice.
BostonSight® PROSE treatment gives the gift of sight to hundreds of
patients each year. They come from all over the world, with one of the
dozens of ocular conditions that PROSE treats. Some, like Jeriann P.,
received necessary financial assistance from BFS. Others have gratefully
supported BFS’s charitable efforts to provide help to those who cannot
afford PROSE treatment. Bobbi M. made a generous financial contribution.
Eileen S. flew herself from Chicago to volunteer at SJS Care Week. Maureen
G. ran the Boston Marathon and raised more than $5,000 for BFS.
join us online.
linkedin.com/
company/1188935
youtube.com/bostonsight
This year, please give the gift of sight to someone else - with a tax-deductible contribution to BFS. You can designate your gift to the Patient and
Family Fund, the Patient Networking and Outreach Fund, or you can make
an unrestricted gift to be used wherever the need is greatest. For more
information on how you can support BFS, please contact Suzanne
Kinsellagh, Chief Development Officer, at 781-726-7515.
Sincerely,
The PROSE Eye View Editorial Team
facebook.com/bostonsight
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e duc at ion an d r esea rc h
PROSE treatment publication in Ophthalmology
BFS Medical Director Deborah S. Jacobs, MD, was recently a co-author on
Prosthetic Replacement of the Ocular Surface Ecosystem as Treatment for
Ocular Surface Disease in Patients with a History of Stevens Johnson
Syndrome/Toxic Epidermal Necrolysis, to be published in Ophthalmology, the
journal of the American Academy of Ophthalmology. Authored by Thanos D.
Papakostas, MD, with additional co-authors Hong-Gam Le, BA (a former
BFS Research Associate), and James Chodash, MD, the retrospective study
reported the results of BostonSight® PROSE treatment for 86 patients.
Results were based on visual acuity at last follow-up appointment and visual
function based on the National Eye Institute 25-item Visual Functioning
Questionnaire (NEI VFQ-25) at 6 months.
The study found that BostonSight® PROSE treatment offers sustained and
significant improvement in visual function and acuity for SJS survivors with
ocular complications. The mean visual function score of participants
improved from 48 at their baseline exam to 72 at their six month follow-up.
In addition to these improvements in visual function, patients also reported a
mean increase of eight points in their general health. Median visual acuity
improved from 20/60 to 20/25.
PROSE at American Academy of Optometry
In November many of the BostonSight® PROSE Clinical Fellows will attend
the 2014 Annual Meeting of the American Academy of Optometry, to be held
in Denver on November 12 – 15. They will start the week with an evening
of networking at the BostonSight® PROSE Provider Network Dinner. Later
in the week, BFS clinician Alan Kwok, OD, FAAO, will join Michelle Hessen,
OD, FAAO, PROSE provider at Wilmer Eye Institute, to lecture a course on
Anterior Segment Disease: Treatment and Co-Management.
This year, two posters on PROSE treatment will be presented at the meeting.
BFS Director of Clinical Care Karen G. Carrasquillo, OD, PhD, FAAO
(pictured, left), will present her work entitled Use of PROSE Prosthetic
Device as Treatment Option for Paralytic Lid Ptosis Post Open Globe Injury
and Trauma in a Pediatric Patient; and authors Dr. Prasad Sawant and Dr.
Urmi Shah of the PROSE clinic at The Eye Super Specialities, Mumbai, India,
will present Past Meets the Future: Management of Irregular Corneal
Astigmatism with PROSE Treatment.
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B F S staff
New hires bring skill and experience to BFS
Amy Parminder, MD (below left), and William King (below right) recently
joined the BFS staff. Both bring many years of expertise in their respective
fields. Please join us in welcoming them to BFS.
Amy Parminder, MD, is the newest addition to the BFS medical staff. Dr.
Parminder is a graduate of Harvard University and Dalhousie University
Medical School in Halifax, Nova Scotia. She completed a Cornea and Refractive Surgery Fellowship at Manhattan Eye, Ear and Throat Hospital and a
Glaucoma Fellowship at Tufts University. Prior to joining BFS, Dr. Parminder
was an assistant professor at Boston University and Tufts University. Dr.
Parminder is a Diplomate of the American Board of Ophthalmology and
Fellow of the Royal College of Surgeons of Canada.
BFS has hired William King to be its first Quality Assurance Manager. Bill,
who holds a bachelor’s degree from the University of Lowell, comes to us
with extensive experience in his field. Prior to joining the BFS staff, he served
as the Quality System and Regulatory Compliance Manager at STERIS
Isomedix Services in Northborough, MA. Bill will play a crucial role as BFS
moves towards certification by the International Organization for Standardization and he will spearhead our FDA Compliance program.
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a c h ang e d wor l d
Rhonda Bonneville - a patient’s story
One day in 2011, Rhonda Bonneville’s
world changed when she realized that
she could no longer clearly see her
computer screen at work. Shortly
afterwards, she began experiencing eye
pain. She ordered a new pair of prescription glasses during an appointment with
her local optometrist, but by the time
her glasses were ready, her vision had
changed and they were useless.
In disbelief, her doctor performed
another eye exam and was astonished
that the results were completely different
than the exam just days before. Over the
next several weeks he performed
multiple exams – in one day alone she
had eight different test results. Finally,
a visit to the ophthalmologist revealed
that Rhonda’s visual fluctuations were a
result of long-term complications of a radial keratotomy
surgery (to correct nearsightedness) more than 20 years
ago. “He told me that I was losing my vision and there
was no way to tell how far it would progress,” said
Rhonda.
As her vision and eye pain worsened, Rhonda also experienced some catastrophic losses – her job, her health
insurance, her pet and her house, which added to her
growing depression. She sought help from multiple eye
doctors. “I was told that I would always have to wear
glasses over any type of lens they gave me. They said I
would never drive again.” She tried many types of lenses,
but due to her distorted corneas and very dry eyes, they
caused her pain and blurred her vision.
Her numerous medical appointments were complicated
by the fact that, due to her declining vision, she could not
drive. Luckily, she had help. “I have
a great group of friends. My friend
Jessica drove me back and forth to
medical appointments in Boston and
paid for my meals. Other friends were
similarly generous.” A veteran of the
Armed Forces, Rhonda eventually
activated her military benefits and
began receiving treatment at the VA
Boston Healthcare System; the VA
provided transportation.
Finally, someone suggested BostonSight® PROSE treatment. Rhonda was
skeptical. “After all the lenses I tried,
including sclerals, what could this place
offer that would be so different?” Little
did she know that her world was about
to change again.
When Rhonda met Chirag Patel, OD, at Boston Foundation
for Sight, he told her that much of what she had been told
by other doctors was wrong. “Dr. Patel said I would be
able to wear just prosthetic devices, without glasses, and
I would be able to drive. And he said I wouldn’t be in pain
anymore.”
And to her amazement, he was right.
Today Rhonda wears her PROSE devices up to 16 hours
a day and can drive during daylight hours. Her unrelenting
eye pain is gone. As she adjusts to life without frequent
trips to the eye doctor, Rhonda can now focus on making
decisions about her life and what she will do in the years
to come. As she ponders her future, Rhonda is grateful for
being able to have options, thanks to the restored vision
and improved quality of life provided by PROSE treatment.
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c om m uni t y N ews
Educating the BMT community about PROSE
Last month, BFS Communications and Web Manager Melissa Hatch traveled
to New Jersey to represent BFS at the exhibit hall at the BMT InfoNet’s Sixth
National Celebrating a Second Chance at Life Survivorship Symposium. The
event brought together close to 300 blood and marrow transplant (BMT)
survivors, their family members and medical professionals.
About 35 people attended a presentation by Anne Steiner, MD (pictured)
on ocular graft versus host disease (GVHD), where she discussed a number
of treatments for the condition, including BostonSight® PROSE. Melissa was
on hand for the presentation to hand out educational materials and answer
questions, as was North-Shore LIJ Health Systems’ BostonSight® PROSE
Clinical Fellow Corina Busuioc, OD.
BFS has made a commitment to raise awareness about PROSE treatment
in the BMT community. To that end, Melissa will travel again, this time to
San Diego in February 2015 to attend the BMT Tandem Meetings, which are
the combined annual meetings of the Center for International Blood and
Marrow Transplant Research (CIBMTR) and the American Society of Blood
and Marrow Transplantation (ASBMT). The meeting is attended by
thousands of investigators, clinicians, laboratory technicians, clinical research
professionals, nurses, pharmacists, administrators and allied health
professionals. This is the fifth year that BFS will staff a table in the exhibit
hall.
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c om m uni t y r esou rc es
How long does BostonSight® PROSE treatment take?
on the bfs blog
Visit our blog to read a letter
from Mary, who had the
opportunity to provide her
ophthalmologist with
information about PROSE
treatment. We also feature a
great post this month on
caregiver support; posts
about World Sight Day and
Blood Cancer Awareness
Month; and information on
how amniotic membrane
transplantation can help
prevent vision loss in Stevens
Johnson syndrome survivors.
BostonSight® PROSE treatment takes approximately 4-12 full business days,
and includes customizing multiple trial prosthetic devices, each step followed
by a trial wearing session, in order to achieve the best customization
possible. An optimal customization is critical not only for comfort and
improved vision, but also necessary for the prosthetic device to successfully
replace and/or support the healing of damaged ocular surface system
functions. The final prosthetic device or set of prosthetic devices is unique
to each patient’s eye shape, disease profile, and specific treatment goals.
These 4-12 days typically include at least three sessions for training in the
care of your prosthetic devices, including handling, cleaning, storing, and
application and removal, to ensure that every patient is comfortable and
confident in their use. It is not unusual for a patient to require 5-10 training
sessions during the course of prosthetic device customizations. Patients that
live nearby a PROSE provider may space out their visits during the treatment
process, extending the time between initial consultation, the start of the
customization process and completion of the customization process.
Caring Voice Coalition
Caring Voice Coalition is a non-profit organization dedicated to improving the
lives of patients with rare, chronic illnesses. The diseases they support
include Stevens Johnson syndrome, inflammatory eye disease and severe
chronic pain. On their website, co-founder Pam Harris says, “We recognized
that the needs of a very select niche of people were not being fully met. We
started Caring Voice as a way to assist and help improve the lives of people
with orphan and ultra-orphan diseases.”
From comprehensive outreach programs to services aimed at financial,
emotional and educational support, Caring Voice Coalition empowers and
supports patients and their loved ones. In addition to financial assistance,
Caring Voice Coalition provides insurance education and counseling, and
patient support programs.
© 2014 Boston Foundation for Sight. All rights reserved.
Patient letter on BFS blog
464 Hillside Avenue, Suite 205, Needham, MA 02494
Phone: 781-726-7337 Fax: 781-726-7310
Visit our blog to read a letter from Mary, who had the opportunity to provide
Web: www.bostonsight.org
Email: www.bostonsight.org/contact
her ophthalmologist with information about PROSE treatment. We also
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