March 2017 E-Update
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March Is NATIONAL EYE DONOR MONTH
Individuals with KC are among the best ambassadors to tell the story about the urgent need for donated corneas.
Blood type, age, eye color and quality of vision are not factors. This month is the perfect time to encourage your friends to register as donors. To read inspiring stories of people whose lives have been changed because someone chose to become an cornea donor, visit the Eye Bank Association of America’s website. To learn more about organ donation, or to register, visit Donate Life.
How Many People Have KC?
The NKCF website and our printed material have long stated that keratoconus occurs in one person in every 2,000.
That number was derived from a voluntary patient registry that was initiated and maintained in part, by NKCF, from the 1930s to the early 1980s. Today, most experts believe that number seriously undestimates the number of individuals living with KC.
Read more here about a soon-to-be published article that calculates the number may be five to ten times higher than previously reported.
Managing Corneal Transplants
NKCF hosted a day long keratoconus roundtable in early February at University of California – Irvine.
About 20% of patients with KC – those with most advanced cases whose vision cannot be corrected by non-surgical means – are candidates for corneal tranplant surgery.
Dr. Laurence Sperber, MD , Director of the Cornea Service at New York City’s NYU Langone Medical Center reminds patients of the importance of working with your eye doctor before and AFTER your surgery. Read more here.
Crosslinking Roundtable
NKCF hosted a day long keratoconus roundtable in early February at University of California – Irvine.
A dozen optometrists and ophthalmologists, representing three prominent professional organizations spent the day discussing cross linking-related issues. We are grateful to the Cornea Society, International Keratoconus Academy and the ASCRS (American Society for Cataract and Refractive Surgery) for their participation and support. We hope to produce materials and information for the public based on the recommendations and observations of these experts.
Special thanks to the individual participants:
- Dr. Michael Belin, MD of Tucson, AZ
- Dr. Clark Chang, OD of Philadelphia, PA
- Dr. Barry Eiden, OD of Chicago,IL
- Dr. Marjan Farid, MD of Irvine, CA
- Dr. Sam Garg, MD of Irvine, CA
- Dr. David Geffen, OD of La Jolla, CA
- Dr. Barry Lee, MD of Atlanta, GA
- Dr. Marian Macsai, MD of Chicago, IL
- Dr. Francis Mah, MD of La Jolla, CA
- Dr. Ryan McKinnis, OD of Cleveland, OH
“Caption This!” Contest
March Caption This!
Express yourself and give the public insight into life with KC. Winner will
be announced in the next e-Update. Submit your caption on our
Facebook page
Caption This!
February Winner!
Congratulations to our caption contest winner,
Darbi Pacifico of Pittsburgh.
Caption This!
Pregnancy & Crosslinking
In an article published in the European journal, Acta Ophthalmogica, researchers observed that pregnancy can increase progression of keratoconus.
They suggest that women with KC who have intentions of becoming pregnant, may consider corneal crosslinking treatment prior to pregnancy in an attempt to stop progression. Read more and some observations by Dr. Clark Chang, OD here.
Re-emergence of Keratoconus
Rebekah Montes, OD,Houston, TX
Does a corneal transplant ‘cure’ the
progression of keratoconus?
No, not always. In a very small percentage of cases, keratoconus may re-emerge years or even decades after surgery.Read more here.
KC Survey Results
Thank you the more than 400 individuals who participated in the Mayo Clinic survey
The researchers are evaluating responses and will be publishing their data and sharing the results with NKCF. Survey director Dr. Ellen Shorter, OD, assistant professor of ophthalmology at the Illinois Eye & Ear Infirmary in Chicago noted that successful management of keratoconus is a team effort. A slight majority of patients get their eye care from an ophthalmologist (an MD or medical doctor) (51%), followed by an optometrist (an eye doctor or OD) (41%). For some patients, their contact lens fitter or technician is the professional who provides the majority of their eye care (7%). Our recommendation is that you assemble a team that includes all three professions working together so that you will have the most options for your treatment!
TXEllen Shorter, OD
Illinois Eye & Ear Infirmary
National Doctor's Day
March 30 is National Doctors Day.
First established more than eighty years ago, the day has become a way to acknowledge special caregivers. For keratoconus patients, it is the perfect time to celebrate the dedicated ophthalmologists and optometrists who have helped save or restore vision. NKCF has set up a way to tell eye doctors how important they are. Say thanks to your doctor on our website between now and March 25 and tell us why he or she makes a difference in your life. We’ll send your doctor a special message on your behalf, and NKCF will highlight some stories on our website. To cast your ballot for your choice of NKCF Top Doc, fill out a ballot here
Thank You For All That You Do!
Your Support makes things Happen!
Thank you to our generous supporters who made year-end gifts to NKCF. Remember, donations to NKCF through the UCI Foundation are used exclusively to support the programs of the National Keratoconus Foundation. Thank you!!
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
This month, we invited some of the leaders in corneal cross-linking to a day-long meeting hosted by NKCF. We want to develop the best responses to the questions you ask. We agreed there is still much to learn about CXL. Rest assured that your eye care professionals are as anxious as you to best apply this technology. They are actively investigating ways to improve treatments and outcomes.
On a related note, the company responsible for the FDA-approved cross-linking devices, Avedro, is conducting a customer survey for ophthalmologists who are using their crosslinking equipment. The company will be making a $25 contribution to NKCF for each completed survey. We are grateful to Avedro for this creative way to show support for NKCF, and to the doctors who participated.
Finally, remember to Cast a vote to honor your eye doctor. You will be helping us to identify and celebrate the very best.
From the NKCF offices at University of California – Irvine to your homes, we send our support and affection.
Mary Prudden
Executive Program Director
