NKCF Keratoconus family symposium (Chapel Hill NC, 6/23)
I had such a lovely time at this event last Saturday, and am so grateful to NKCF for inviting me.
The family symposium is a new innovation from NKCF and is the third of its kind to take place this year. Last Saturday's was at the William & Ida Friday Center, Chapel Hill.
This was a more intimate meeting than the one I had the pleasure of attending at UC Irvine earlier this year, and smaller groups definitely have their advantages in terms of everyone having plenty of opportunities to get all their questions answered!
I enjoyed all of the talks. Mary Prudden, who runs the National Keratoconus Foundation, opened the event, and we had an excellent overview of KC by Dr Thomas Devetski whom I really enjoyed. This was followed by Dr David Holler, an optometrist specializing in contact lenses for keratoconus and for post refractive surgery issues, a favorite subject for me!
Then we all enjoyed Richard Davis, an ophthalmologist who performs corneal transplants. It is a true pleasure to see ophthalmology and optometry teaming up in patients' interests... keeping patients in contacts wherever possible rather than rushing them into surgery. All the medical presenters seemed very happy and excited about the implications of scleral lenses for patients in this regard, knowing that corneal transplants have a limited lifespan.
Next up of course was corneal crosslinking, keratoconus' inevitable hot topic, and Vipul Shah from Charlotte covered this one beautifully. I learned a lot, again!
Oh, and somewhere in there I talked a lot about the practical issues related to scleral lenses, including challenges involved in traveling with them.
After that was a series of "practical life" sessions which are such a key feature in making these family symposium events uniquely valuable:
Sara Rapuano (spouse of a well known cornea specialist incidentally, some of you might recognize the name) gave an incredibly detailed presentation on everything you need to know to effectively argue with your insurance company about getting what you need covered.
John Jacobson gave a talk on handling emotional issues. Unlike the one in Irvine, there was no angle specific to keratoconus, but it was an enjoyable talk. My personal takeaway was the very very simple statement that you will travel in the direction you are looking.
Bryan Waters, from Durham Public Schools, brought an entire collection of low vision devices and talked at length about getting accommodations for school or work.
Finally, Rachel Dungan, who also spoke in Irvine, gave her very compelling personal story of keratoconus and discussed what patient engagement and empowerment look like.
I cannot say enough about how important I think these kinds of events are, that focus on bringing patients practical information, not just conventional medical information but the extensive types of practical information that help us navigate our practical challenges. Kudos to Mary Prudden and everyone else involved in putting these on - I am looking forward to more.