I saw something on Discovery Health Channel about this when it was still in its
infancy.  (Before an FDA Investigational Study was OKed.)  I think it was on
21st Century Medicine.

Also, since this topic has come up, let me tell you a little bit about me.  I
was born with a PAX6 genetic deletion called AD Coloboma.  (The Spinia Bifidia
or Cleft Palate of the Optic System.)  I have a chunk of iris and zonules (The
hair-fine muscles holding the lens at an even tension and allowing for it to
focus.)  missing at the bottom of either eye.  (I was misdiagnosed for almost 39
YEARS with AD Aniridia, a PAX2 genetic deletion.)  What I DO have as far as
irises are concerned are all rolled up on themselves and not really visible.
And my lenses grew VERY deformed.  ("Bubbled" or "dimpled" at the bottom.)  As a
result, until May 5, 2000, no one has EVER been able to get my vision above
20/200 in either eye.

What happened on May 5, 2000 you may wonder.  Well, in early April of 2000, I
found Dr. Kenneth Rosenthal, MD, FACS of Manhattan and Great Neck, New York.  He
and a German doctor convened what amounts to an artificial iris. (The Aniridia
Ring Type 50C. See <http://www.morcher.com/produkte/sonder/engl/e_sonder.htm>.)
My Seeing Eye husband and I flew from Atlanta / Hartsfield International Airport
to New York / LaGuardia International Airport on May 4, 2000.  I met Dr.
Rosenthal.  He examined me and sat back and stated, "I don't think you have AD
Aniridia.  I see lens involvement.  I think you actually have AD Coloboma."
(Boy was THAT a suprise to me.  I had seen some of the BEST doctors all over the
country and NO ONE ELSE had EVER noticed.)

He then measured and mapped my eyes with all sorts of whiz-bang equipment I had
never seen before.  Every piece of computer equipment came back with a VERY
confusing result.  According to them, I SHOULD have been FAR-SIGHTED!!!  But, I
could only ever see at 20/200.  We went to our hotel in Great Neck.  Dr.
Rosenthal started calling other Eye Surgeons and discussed the confusing
results.  He delayed my date with the OR by two hours to RE-measure and RE-map
my eyes and discuss it with us.  It was decided, by all three of us, to trust
what the computers had told us.  We decided to go with an IOL for a Far-Sighted
eye.

I had a set of Aniridia Rings implanted in my left eye under a Compassionate
Waiver of the FDA on that fine Friday in May.  (They are NOT FDA Approved for
use by US citizens.  I was only the FOURTH US citizen to get a Compassionate
Waiver out of the FDA for these things.)  I went under with 20/200 vision in
BOTH eyes.  One hour later, I was measured at 20/100 ion my left eye and 20/200
in my right eye.  I had my Cataract-clouded lens removed, a set of the Aniridia
Rings implanted, a new Inter Ocular Lens implanted.  That was when Dr. Rosenthal
FOUND a real pretty, deep  brown iris rolled up on itself and he confirmed his
suspicion that I HAD been misdiagnosed.  He laid the iris over the top of the
Rings.  The lens involvement was the REAL culprit for my near sightedness.

Three months later, Dr. Trevor Woodhams, the owner of The Woodhams Eye Clinic
and an Associate Professor at Emory University Medical School, here in Atlanta,
manned the YAG Laser to punch a hole in the membrane between the middle and back
chamber of my left eye.  My poor excuse for a lens had grown SO deformed it had
caused that middle chamber to grow WAY too big.  With it gone, the membrane
shrunk and wrinkled, bringing my vision back down to less than 20/200.  As soon
as that hole was there, I was back up to a solid 20/100.

A year after my YAG Laser treatment, I am still waiting for my right eye to be
done.  Why have I waited so long you may wonder.  Well, you see, my sister and
BOTH of her children have the SAME PAX6 genetic deletion I have.  And these
types of implants are NOT FDA Approved.  Well, Dr. Rosenthal has FINALLY
convinced the FDA to allow an Investigational Study to commence.  (He used my
amazing results to nudge them to the point of saying "Yes".)  You see, with only
1 in 100,000 births resulting in a PAX2 deletion and 1 in 100,000 births
resulting in a PAX6 deletion, only about 4,000 Americans have AD Aniridia and
only about 4,000 Americans have AD Coloboma.  The FDA is more concerned about
Fast Tracking things like Viagra, etc.  (Sorry, I couldn't resist a poke at the
FDA.)

Also, the FDA gave Morcher, GmB SUCH a hard time, Mr. Morcher threw in the
towel.  With the possibility of so few Americans needing these devices, he
decided he could NEVER make a profit after absorbing the costs the FDA was
forcing on him.  Morcher is a family owned business.  (All NEW Toxicity Studies,
even though these things are made of EXACTLY the SAME material as the IOLs.)
So, the Investigational Study WILL go forward, but with Ophtec's Iris
Reconstruction Implants with coloured haptics (See
<http://www.ophtec.com/irisreconstruction.htm>.)  Erik-Jan Worst, President and
CEO of Ophtec, has decided that since SOME Americans WILL benefit, Ophtec will
absorb whatever loss there is.  (Thank you, Mr. Worst!!!)

So, hopefully, by the end of this year, I will be one of the first "official"
Investigational Study Patients for these things.  I REALLY want these things FDA
Approved by the time my niece and nephew get old enough to be able to have the
surgery.  (Without FDA Approval, insurance companies will NOT touch these
things.  I put out over $10,000 USD OUT-OF-POCKET in expenses to have my left
eye done.  And I am looking at an equal sum for the right eye.)

Mary P. Blanton
Bilateral AD Coloboma of the iris and lens, Corrected Bilateral Strabismus, One
Corrected Infantile Cataract, One (Not So) Latent Infantile Cataract. Congenital
Nystagmus. 20/100 in left eye.  20/200 in right eye.


"Kennedy, Bud" wrote:

> A Chip That Mimics a Retina but Strains for Light
>
> AUG 09, 2001
>
> A Chip That Mimics a Retina but Strains for Light
>
> By ANNE EISENBERG
>


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