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Spring
2009 update
- A message from the President
- Seminar - Corneal crosslinking: how safe
and effective is it really?
- Keratoconus and allergies
- Update on CERA corneal crosslinking trial
- Latest seminar videos
- Volunteers flock to Melbourne optometrist
training clinics
- Organ Donation Awareness
- Action on contact lenses
- Support work
- Useful Australian eye health
and other health-related sites
- Other Association news
- Articles on the Net
- Research - NSW stem cell breakthrough & keratoconus
A
MESSAGE FROM THE PRESIDENT
 Welcome
to this latest news update. Its been a while. Our
apologies. Often we barely have time to do those
things that seem essential and it can be hard to let
you know about the good work the committee is doing on
behalf of members and supporters.
Please contact us
with any suggestions about how we can best keep
in touch with you about KA activities. Also please
send us any items of interest you would like to share
with other KA members.
We require
help on
a number of other projects. Contact us if you
want to lend a hand.
All the best
Larry Kornhauser
DEMYSTIFYING
KERATOCONUS SEMINARS
Corneal
crosslinking: how safe and effective
is it really?
(August 5, 2009)
-
The
Association held a public seminar on corneal crosslinking
in early August. Some 60 patients and their families,
optometrists and ophthalmologists heard presentations
by Associate Professor Grant Snibson, chief investigator
of the CERA crosslinking trial in Melbourne, and Dr
Christine Wittig who is assisting him.
Dr Wittig explained
the trial and outlined the results to date (see below).
These indicate that the treatment has proved both safe and effective
in halting progression of keratoconus in the patients
treated over the past three years since the start of
the trial.
Joanne Brooks, a teacher and artist and the first patient treated in the trial,
described what motivated her to join the trial and
her experiences since. Her lively presentation provided
a useful patient perspective on corneal collagen crosslinking
and on what patients and their families should expect
from the treatment.
Assoc. Prof. Snibson then attempted to grapple with the hard questions surrounding
the treatment: who should consider it, when, and where
the operation should be performed. He also discussed
the different types of crosslinking being offered by
corneal surgeons today and some of the "extras" also
being proposed. Finally, he explained who shouldn't
have the treatment and why.
The presentations were
followed by a Q&A session which allowed attendees an
opportunity to raise other issues of concern.
We strongly
recommend the video of this seminar to anyone considering
corneal collagen crosslinking for themselves or a family
member. Details of how to purchase the
seminar DVD, now available, can be found on the video page.
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KERATOCONUS AND ALLERGIES
The
arrival of spring means warmer weather and longer days. But
for many people with keratoconus it also heralds the return
of allergies: hayfever, asthma and
itchy eyes that can make life hell for those of us who wear
contact lenses.
Keratoconus can be aggravated by eye rubbing. So if you suffer
from itchy eyes, please see your chemist, GP or optometrist
to obtain some of the excellent eye drops that can provide
relief at this time of year. If you also have hayfever, a
general antihistamine tablet may be a better alternative.
Chronic sufferers should see an allergist to explore ways
of achieving long term relief and control of their allergies
and asthma.
For problems with dry eye, consider using a rewetting agent
on your contact lenses. Again your contact lens fitter should
be able to advise on a strategy for managing the problem.
- If you suffer from either condition, it is vital not to
rub your eyes and to seek treatment from an experienced keratoconus
practitioner to ensure that your contact lenses do not damage
your corneas. Rubbing your eyes may feel good, but
it also encourages you to continue and risk further progression
in your keratoonus.
UPDATE
ON CERA CORNEAL CROSSLINKING TRIAL
The
Centre for Eye Research Australia (CERA) in Melbourne
has provided the Association with an update on its corneal
collagen crosslinking trial. Started in 2006, the CERA trial
was the world's first randomized clinical trial of corneal
crosslinking and is being followed closely by corneal surgeons
and keratoconus patients in Australia and overseas.
Key Findings
-
Although
results varied in the first 3-6 months, after 12 months
all patients who received the crosslinking treatment
showed stabilization in their keratoconus at their pre-treatment
level.
- Some
patients even experienced a mild flattening in their
cornea.
Volunteers required for "thin cornea" pilot
study
- CERA
is also conducting a pilot study of crosslinking for
patients with corneas with a thickness of less than
400 microns.
Patients who are
interested in participating in the ‘thin cornea’ pilot
study or in being assessed for a placement on the waiting
list are advised to contact their eye care specialist
or Trial Coordinator Tony Ngo on 03 9929 8618 or via
email at tonyn@unimelb.edu.au
Funding is urgently required for both
current and future studies. Please contact Tony Ngo (details
above) if you can assist.
- The
full update can be downloaded in pdf format here.
Other
Crosslinking News
- Many
members are requesting information about corneal crosslinking
and where they can find a corneal surgeon to perform
the operation. We can help you find a centre which performs
crosslinking. But we remind all keratoconus patients
that this is not a risk-free treatment and should be
performed by a corneal surgeon who has experience in
treating keratoconus.
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VIDEOS OF KA SEMINARS
Videos now
available
- Corneal Collagen Crosslinking: how safe and effective
is it really?
by Associate Professor Grant Snibson, Dr Christine
Wittig-Silva, Joanne Brooks
- New contact lenses and a patient's view of corneal
collagen crosslinking
by Richard Lindsay and Anslie Fitzsimons.
Free audio podcasts of these presentations can be found here.
- All previous seminars held by the Association
are also available.
For details go to the video page.
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KA
MEMBERS SUPPORT OPTOMETRIST TRAINING CLINICS
(Melbourne - September 30 - October 28)
Once
again, Keratoconus Australia members responded positively
to our call for volunteers for the special keratoconus
clinics organized by Melbourne optometrist Associate Professor
Richard Vojlay and Melbourne University's Department of
Optometry and Vision Sciences for final
year optometry students.These clinics are structured to
teach students more about keratoconus, the concerns of
patients and in particular, how best to fit contact lenses
on keratoconic eyes and corneal transplants. Thanks to
the participation of KA members, students were again able
to attempt contact lens fits on a wide range of keratoconic
and post graft corneas.
KA members attending the post-graft clinics were able to
take advantage of the presence of AP Vojlay and optomistrist
Laura Downey to obtain some tips on how to improve their
contact lens options.
The clinics have been extremely well received
by the students and the Department of Optometry and Vision
Sciences since they began three years ago.
This
year's special lecture on keratoconus for the final year
student's was held on October 16 and was well attended
by the final year students. Associate Professor Vojlay
outlined the special problems raised by keratoconus, while
KA President, Larry Kornhauser and KA Secretary Belinda
Cerritelli, described the issues commonly facing patients
and their families when dealing with keratoconus. The lecture
concluded with a lively Q&A session which tested the
students' ability to deal with real life situations.
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ORGAN
DONATION AWARENESS
Keratoconus
Australia supports organ donation by distributing
brochures
for the Australian Organ Donation Register
to all new members. We encourage
all members to discuss this important issue
with friends and family, who can
register as organ donors. Should you require
more information about organ
donation and the register, go to Australian
Organ Donor Register
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ACTION
ON CONTACT LENSES
Keratoconus
Australia continues to press for action to lower
the cost of specialized contact lenses for keratoconus.
Details of recent and past efforts in this regard can
be found on our Action
on Contact Lenses page.
-
But
that could take time. So in the meantime, we suggest
members put pressure on their private health funds
to recognize the special nature of contact lenses for
keratoconus and to provide higher rebates on claims
for these specialized and indispensable lenses.
With
the assistance of the US Keratoconus Foundation, we
have prepared a letter which members can download and
print to send along with their contact lens claims
to their private health fund. Please
send this letter to your health fund EVERY TIME you submit
a claim for a rebate on your new contact lenses.
Letter to
request a higher rebate from your health fund (in pdf format)
-
Latest
initiatives
KA attended the July 2 meeting of Vision2020 Australia's
Low Vision & Rehabilitation Working Group to secure
backing from affiliated members
for our campaign to lower the cost of contact lenses
for keratoonus. A vote taken at the meeting endorsed
the KA initiative and authorized Vision2020 to provide
ongoing support to KA.
Since then, Belinda and Larry have had talks with various
representatives of optometrist groups in a bid to advance
this issue. We will report back as developments occur.
-
Other
contact lens news
SynergEyes, a new hybrid contact lens for
keratoconus, has finally arrived in Australia. These
lenses offer a level of comfort to advanced keratoconus
patients which is not always achievable with normal
rigid gas permeable lenses. They have been used
successfully
overseas to fit patients
who might have otherwise
required a corneal transplant. Unfortunately they
are very expensive, need to be replaced regularly (every
6-12 months) and can be tricky to fit. Post-graft lenses
have not been very successful to date. Information about
the lenses can be found here (warning:
this is advertising material).
As they need to be ordered from the US, the manufacturer
is supplying them only to a limited number of contact lens
fitters around Australia. If your contact lens fitter does
not have access to these lenses, please contact us
and will we try to assist you in finding a local provider.
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SUPPORT
WORK
Keratoconus
Australia has provided support to over 140 people since
the start of 2009. This support has taken various forms
including:
-
assistance in finding eye-carers experienced
in fitting contact lenses for keratoconus
and performing corneal
transplants and corneal crosslinking (CXL)
-
counselling for people before and after corneal
transplants and CXL
-
distribution of information about keratoconus, contact
lenses, CXL and corneal transplants
-
providing advice about contact lenses
-
providing information about intacs and other
surgical procedures
-
connecting families with adolescents facing surgery
or dealing with other keratoconus-related issues
Support work is done with the kind assistance of a group of
optometrists and ophthalmologists who provide technical and
medical advice in response to members' queries.
You can obtain support by ringing us on 0409 644 811 or
emailing questions via the Online Forum
(Please note that suppport will be limited from December
21, 2009 to January 25, 2010).
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USEFUL
AUSTRALIAN HEALTH LINKS
This
page on
the Department of Health and Aging website
provides links to a number of organizations which could
help you negotiate the complexities of
the Australian
health
system. Included are:
- Department
of Health and Ageing - Eye Health Page
- Medicare Australia
- Private Health Insurance
Ombudsman
Other useful links
- Australian Competition
and Consumer Commission (ACCC)
- Consumers'
Health Forum of Australia (CHF)
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KA COMMITTEE
NOTES
The
committee has been busy organizing events, promoting the
Association and its work and assisting
people with keratoconus and their families
in many ways.
The committee meets on a regular basis. Please contact us
if you would like further details or you would like to
assist in a current
or future project.
We are still looking for enthusiastic people to join
the committee and bring new ideas about how we can
expand and develop the Association's activities.
Membership
The
Association currently has some 1,420 full members.
That is an increase of over 11% since the
Annual General Meeting held in November 2008.
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ON
the NET
Below are links to some articles and research
of interest to keratoconus patients. Please send us
any information
you
find so that we can share it with others.
(Disclaimer: Keratoconus Australia Inc takes no responsibility
for information found on off-site links. This
information is outside the control of the association
and it remains the responsibility
of internet users to evaluate its accuracy.)
Corneal Collagen Crosslinking
- VIDEO Corneal
Crosslinking for Keratoconus An excellent
animated description of keratoconus and the crosslinking
procedure by a French team headed by Dr David Touboul.
Detailed and targeted at ophthamologists. (real
player required)
- Cataract & Refractive
Surgery Today Europe published a
corneal crosslinking special edition in April 2009 which
examined a range of issues relating to CXL. These include
the impact of crosslinking, patient selection criteria, the
aging effect on the cornea and its use with other surgery.
- Contact
Lens Spectrum has three articles
of interest for keratoconus
patients in its September 2009 edition.
- Ocular
Surgery News Supersite has regular news
updates from around the world. Also covers developments in
contact lenses.
- The US National Keratoconus Foundation publishes
a regular newsletter which
includes articles on a range of keratoconus topics, stories
about living with keratoconus and FAQ's answered by their
consulting optometrist.
Articles in the winter
2009 edition include:
- Scleral Lenses and Keratoconus
- Does Keratoconus Recur After Corneal Transplantation?
- Corneal
Collagen Cross-Linking
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RESEARCH
The
Association continues to involve itself in a number of research
initiatives relating to keratoconus. Contact us
for further details or if you are interested in funding a
project.
- NSW Uni stem cell breakthrough & keratoconus
A number of members have contacted the Association about
the University of NSW's use of stem cells on contact lenses
to restore sight to people suffering from corneal damage.
In particular, members have asked if this procedure can be
used to halt progression in keratoconus or reverse damage
from the condition.
The simple answer is "no" at this stage. The NSW
procedure (outlined here) affects
only the very outer layer of the cornea (the epithelium) and
not the stroma which is affected by keratoconus. The researchers
tell Keratoconus Australia they are looking at ways to use
the procedure to repair and strengthen the stroma - but clinical
trials could be still years away.
Dr Stephanie Watson, a member of the UNSW team, had this to
say about the procedure and keratoconus:
- Our treatment only replenishes the very first layer of
the cornea, the
epithelium. This layer is like the skin of the eye. In keratoconus
it is the
middle section of the cornea, the stroma, that is abnormal.
A different set
of stem cells looks after this part of the cornea so it is
these cells that
need to be replenished not the surface layer. Our lab is
investigating these cells but our findings are not ready
for clinical application yet.
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