May E-Update
Crosslinking in teens children
Keratoconus is commonly described as a disease that presents at puberty, progresses during adolescence, and stabilizes in middle age.
Of course there are variations: some individuals do not suffer any vision problems until they are well into adulthood and, for some youngsters, keratoconus is evident early in their lives. Two new international studies look at the success of crosslinking in teenagers. To learn more, click here.
The Great Debate: Epi-on Vs. Epi-off
Two experts faced off recently in the April issue of Advanced Ocular Care, a magazine for eye doctors.
Perhaps the most confounding question facing patients seeking cross-linking (CXL) treatment today is Epi-on vs. Epi-off. Two experts faced off recently in the April issue of Advanced Ocular Care, a magazine for eye doctors.
It seems that doctors who perform transepithelial CXL (leaving the epithelium intact) sing the praises of epi-on, while doctors who follow the FDA approved protocol of removing the epithelium prior to treatment persuade their patients that the clinical data supports epi-off.
This can lead to some ‘doctor shopping’ by individuals who want to hear both sides. Dr. Andrew Morgenstern, OD, practices in Maryland and supports epi-on. His conclusion can’t be denied, “For individuals who are appropriate candidates for CXL, any crosslinking is better than no crosslinking, regardless of the type of procedure.”
This can lead to some ‘doctor shopping’ by individuals who want to hear both sides. Dr. Andrew Morgenstern, OD, practices in Maryland and supports epi-on. His conclusion can’t be denied, “For individuals who are appropriate candidates for CXL, any crosslinking is better than no crosslinking, regardless of the type of procedure.”
Top Doc 2017
Keratoconus patients on the East and West Coasts are lucky to find the finest examples of keratoconus doctors nearby.
On March 29, Honor A Doctor Day, we announced the results of more than 50 nominations from patients who told us touching stories about why their eye doctor deserves praise. The list included doctors who listened while patients cried from fear and frustration, doctors who patiently answered the same questions and concerns over and over again, and doctors who employed staff members who were considerate and caring. Each doctor who was nominated received a thank you card from NKCF, letting them know that their care of KC patients was appreciated. Thank you to all who shared stories about why their doctor was special.
Click here to meet 2017’s most voted KC docs and see the rest of the list.
Summertime with Contact Lenses
Remember that contact lenses and water sports don’t mix!
Here is a short, but effective video from Columbia Univ. Ophthalmology that reminds patients that the water they swim in may contain organisms that may find a new home on your contact lenses. Even swimming in pools treated with chemicals can be harmful to your contacts. And, the most simple of reasons not to wear your contacts – GP lenses are likely to pop out. If you want to swim in a pool, lake or ocean, or even if you want to enjoy a soak in a hot tub, invest in some waterproof swim goggles. For more tips about swimming with contact lenses, visit All About Vision.
Insurance Info – Are you Covered?
Not only do keratoconus patients live in a blurry world, they often have to battle to get access to the best treatments.
In many insurance plans, specialty contact lenses and CXL are uncovered services. NKCF provides letters that you can send to your insurance company if you are appealing a denial of coverage. Learn more about the appeal process here.
Caption Contest Winners
Congratulations to our winner, Joni K. from Brewster, MA:
Sponge Bob!!! I need your help! All I see are swirls, whirls and halos without my sclerals in!!!
And runner-up, Mily T from Mexico City:
Surviving the week before the annual corneal topography with RPG.
Physician Referral Service Update
One of our most important services is the Physician Referral Program. Starting many years ago, we began to collect information about ophthalmologists and optometrists who were especially skilled in working with KC patients. Experienced contact lens fitters were also added to the referral lists. We sorted the names by state and made these lists available to anyone who contacted us.
Regretfully, the data has not been updated in several years. More and more, we were learning that the information we were providing was incorrect. Doctors who had retired or moved their practice were still on our list; talented new specialists were not included.
This winter we began a comprehensive review of our referral lists. We have reached out to more than 1,500 ophthalmologists and optometrists to verify information. And we asked specialty societies for their members’ names to make sure we identified everyone who might be interested in participating. As we have in the past, NKCF focuses on doctors who have advanced training in cornea disease or contact lenses and has board certification in either ophthalmology or optometry.
We intend to put our updated referral lists on-line. We want to provide immediate access to these doctors for families searching for an eyecare professional. We hope to include additional information on the new referral lists.
This is a big project for us. Thank you for your patience!
Enter the World of Reading
Bookshare is a program that offers books and reading material in ‘nontraditional’ formats for those with visual impairments. You can quality for a free membership if your doctor verifies that you are unable to read standard print. Students with KC may be able to get textbooks and other resources through this nonprofit program created by a Benetech, a company that started out selling reading machines for the blind. If your eyesight can’t be corrected to eliminate the vision disturbances that accompany KC, you should investigate this. Read more here.
If you prefer to send a check, payable to UCI Foundation
to support NKCF, please mail it to:
NKCF – GHEI
850 Health Sciences Rd, 3rd Floor
Irvine, CA 92697
From The Director
Welcome back!
At a recent meeting of eye surgeons, we were asked to speak about the impact of KC on patients. I pulled out results from a survey that NKCF and Bausch+Lomb created a few years ago. More than half of the 1,000 participants reported that their doctor gave them some info about KC, but not enough, and 46% look for new information about KC at least once a month. Our job at NKCF is to share interesting new material that we come across with you. The Epi-on/Epi-off debate was written for doctors by doctors, but many in our audience will find it helpful as they consider CXL. Also, we are working to educate insurers that CXL is the new standard of care for progressive KC. It is taking some time, but health plans are beginning to cover this treatment. That is great news and we hope that the trend will continue.
