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Rosemary
Atallian and
Frances Benham
This is a report by two PXE patients with eye involvement
who were treated with feeder vessel therapy by Dr. Robert P.
Murphy of the Retina Group of Washington, D.C. It is their
experience and understanding. They are not scientists nor
doctors, but they believe their experience may be
enlightening to others with PXE.
Rosemary believes angels watch over her. She learned of her
PXE thirty years ago when she lost central vision in one
eye. She had never met another person with PXE until she
attended the NAPE conference last summer. Two years ago
Rosemary went for her regular eye check-up. She was
astonished to be told that she appeared to have early
hemorrhaging in her good eye. Aware of her bleak future with
the prospect of loss of remaining central vision, Rosemary
decided to try to learn Braille before she became legally
blind. As she talked with colleagues a person she barely
knew told her about a new treatment. Rosemaryís retina
specialist agreed immediately that this was worth
investigation. Dr. Murphy treated Rosemary early in her
hemorrhage ñ and to this day she has lost no vision in her
one remaining precious eye.
Rosemaryís daughter, concerned about her motherís condition,
searched the Internet for information and found the NAPE
website. Rosemary read about our Minneapolis conference and
registered. She came with the information she found about
feeder vessel therapy, most of it from local newspapers. She
shared her experience with all present. Fran asked Rosemary
to invite Dr. Murphy to speak at the 2003 conference to be
held in Baltimore, near his practice.
In November Fran, who had lost central vision in one eye,
realized she was hemorrhaging in her remaining eye. She had
already shared with her retina specialist information about
feeder vessel therapy and was told that he knew all about it
and was waiting for results data to be published in the
scientific literature. Her doctor had also told her that her
occult bleed would not be helped by photo dynamic therapy.
Fran was well aware that it had not worked in her other eye.
She asked to be referred to Dr. Murphy and was told to come
back in three weeks. Her loss of vision progressed through
two more visits during which she asked to be referred and
was put off. At that point she told her doctor she would not
return as she wanted to talk to Dr. Murphy to determine if
she might be a candidate for his treatment. She then got the
referral and saw Dr. Murphy in February 2003, almost three
months after she realized she was hemorrhaging. Dr. Murphy
treated her on the first day of her visit and her vision
quickly began to clear. He treated another leak the second
day and more clearing occurred. Her vision improved as her
eye cleared. She has returned to Dr. Murphy twice and will
see him again in late May. Though her vision is greatly
improved she needs magnification to read normal print. It
remains to be seen if enough improvement will occur so that
she can read without magnifiers.
Rosemary and Fran were both helped by feeder vessel therapy.
Rosemary retained normal vision; Fran reads with difficulty.
The difference appears to be that Rosemary was treated very
early in her bleed while Franís eye went untreated for at
least three months after bleeding started. Her macula is
intact but her retina was damaged.
Fran believes that had Dr. Murphy treated her in December
when it was clear she was leaking, she, like Rosemary, would
have lost little, if any, vision. She believes this is an
important message for those afflicted with PXE. Though she
at times feels anger toward her doctor who knew about feeder
vessel therapy and who also acknowledged he had nothing to
offer her, and yet did not refer her to Dr. Murphy, she more
often blames herself for not demanding an early referral.
Only as vision loss progressed and she realized how
blindness would affect her life did she insist. She often
thinks of NAPE President Maxine Griffithís admonition that
we who have PXE are our best doctors.
Fran and Rosemary are sharing their experience widely and
have talked by phone and email with people across the
nation, including those with AMD, for whom feeder vessel
therapy was developed. Often they are asked what happens in
this therapy.
A visit for feeder vessel therapy is much like any other.
There are the usual questions, dilation and chart reading
evaluation and doctorís initial visual exam. Those who have
been examined by a retina specialist will recognize the next
step of flouroscene angiography.
Once those photos are completed, the patient moves to
another camera, the Heidelberg, named for the German city
where it was developed and is made. This is a high-speed,
infrared imaging system that can look deep under the retina
where feeder vessels grow. With a laser designed to make a
tiny dot of heat, the feeder vessel, once identified and
located, is sealed by photocoagulation. If it remains sealed
for two weeks it is not likely to leak again. Other feeder
vessels could develop so quarterly checks by oneís retina
specialist are necessary.
It is not understood why these tiny vessels, about a fifth
of the width of a human hair, begin to grow. But plump up
and grow they do, causing destructive hemorrhaging and
vision loss.
Years ago Dr. Murphy, then at Johns Hopkins University, with
colleagues, helped to develop the theory for feeder vessel
therapy. Unfortunately the technology needed did not yet
exist. They tried various technologies and finally found the
Heidelberg, invented for other purposes. It was retrofitted
for this therapy. It worked and treatment has been available
for several years. Only a few PXE patients have been
treated, and it appears that our slow occult leaking may
prove good candidates for it if caught in time.
TIMING IS CRUCIAL. As with most medical therapies, early is
better than late treatment. Fran and Rosemary note the
national campaign to encourage women to practice monthly
checks to catch breast cancer as early as possible. Blood
pressure machines are found in many public places as we are
urged to control high blood pressure to avoid stroke. With
so many, especially the elderly, in danger of AMD and other
vision threatening disorders, a national campaign to
encourage regular use of the Amsler Grid is appropriate.
Certainly all who have PXE should be taught to check their
vision on it regularly. The loss of central vision is
devastating. With feeder vessel therapy, a promising
treatment, we who have PXE have reason to hope and use the
grid often.
Rosemary and Fran want to be sure all who read their story
understand that they offer their experience as lay persons
dealing with PXE. Dr. Robert Murphy has agreed to talk about
feeder vessel therapy from his perspective as a research
scientist involved in its development and as a caring
physician who treats patients with it. He will join us at
the NAPE annual conference in Baltimore. Conference
participants will have an opportunity to ask him questions.
Rosemary and Fran plan to be there too, eager to talk with
all who are interested. And finally, as Rosemary believes
angels watch over her, Fran has come to believe NAPE and
Rosemary are among her angels. Both Rosemary and Fran
suspect Dr. Murphy may be a saint in disguise.
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