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. 

SSF (Friday afternoon, 3/3)

Steve Cohen, optometrist in Scottsdale AZ and SSF's Chairman of the Board, gave a talk next on what's new in Sjogrens dry eye. A talk.... peppered plentifully with slides titled "Points to Ponder" such as "What was the best thing BEFORE slided bread?" and "If love is blind, why is lingerie so popular?" Anyway. Dr Cohen didn't waste too much time on dry eye 101 type basics, sprinting pretty quickly through ADE vs EDDE and diagnostic tests (with brief digressions on diet - he too is a fan of diet to minimize inflammation - and on the too-often overlooked visual blurring that comes with dry eye.

He talked about most of the pieces that can go into a personalized treatment plan, including:

• lid hygiene

• omega 3

• lifitegrast

• OTC lubricating drops

• steroids/nsaids

• antibiotics

• warm compresses

• punctal plugs

• cyclosporine

• water intake

• corneal bandage

• orbital shields (only, this was in the presentation but he didn't talk about it, mental note to ask him what he meant! Moisture chambers? Something totally different?)

• lipiflow

• autologous serum

Incidentally, ALL eye doctors treating someone for dry eye ought to have a list at least that long that gets discussed with their patient - as opposed to just plugs and drops - so their patient knows the rationale of what they're doing.

On artificial tears, he sounds like a pretty big fan of Systane Balance (was involved in trials) and also mentioned a recent study of a Rohto drop in Sjogrens patients. Must get link... I've been searching and haven't found it yet. Thankfully, he warned AGAINST the use of redness reliever drops, but did mention that they're using Alphagan P, diluted in artificial tears, off label and occasional use only, for eye whitening. 

On water intake, he said the new guideline is 1oz daily per 2 lbs body weight. Mentioned phone apps to track your water intake. 

On supplements, he mentioned the disappointing results of the DREAM study being presented back east today (in fact I got a tweet from a friend about that just an hour or two before). This was an extensive study with a large cohort, and it failed to show any difference between omega 3 supplementation and placebo, in this case, olive oil. But hey, maybe there's something to olive oil we haven't tapped yet! He advocates for PRN and Nordic Naturals, as you should use triglyceride form of Omega 3s for maximal absorption.

I was glad to hear him advocate Tranquileyes as well.

He talked about amniotic membrane treatments Prokera and Ambiodry a bit (prefers the former).

He went over plugs, but suggested testing first with inflammadry because of the concern about retaining too many inflammatory cells on the cornea.

He went over several practical tips on computer use - keeping the screen low so eyes aren't open as wide; angling the screen slightly for less glare; and following the 20/20/20 rule

Hypochlorous acid was up next. He's a Avenova fan - until their disillusioning move of going Rx and high priced, and now recommends Ocusoft's HypoChlor because the pricing is so much better. I was glad to hear him talk about lid scrubs, including the above but also Ocusoft wipes, rather than baby shampoo because of the studies that have shown it has some negative effects alongside the benefits. 

Then Lipiflow, Blephex, dry eye friendly contacts, scleral lenses and serum drops... it really was a very through and well rounded presentation. I was so glad to hear sclerals included. I think that's more likely, in general, in optometry talks than ophthalmology talks, which is unfortunate.

I got chilled in the conference room and had to disappear after that for awhile so I missed Steve Taylor's talk about the state of Sjogrens and work that's being done. But, it's been a great day.

SSF (Friday afternoon, 2/3)

Friday's talks opened with Chadwich Johr, rheumatogist at UPenn's Sjogrens Center, who gave the traditional overview of Sjogrens, in anything but a traditional manner. A very polished, entertaining and effective presentation. He started off by pointing out the difficulty of presenting to groups like this because you've got everyone from the newly diagnosed to the hyper-self-educated veterans that endlessly ask impossible questions.

A lot of his talk centered on the process of diagnosing Sjogrens, and breaking down what that looks like to a rheumatologist, all the things they take into account, and how the picture may look very different for each individual. He walked through a chart of 4 items (clinical signs of dry eye, ditto of salivary gland dysfunction, lab testing - SSA+ - and lip biopsy) and talked about how as long as there are any 2 or more of those including proof of autoimmunity, they are diagnosed with Sjogrens. He talked about how diagnosis is never exclusively symptom based and that there are in fact many other things that can cause the same symptoms. 

Dr Johr introduced a couple of Sjogrens scoring systems:

• 2016 ACR-Eular Sjogrens Classification Critera: Schirmer+ i1 point, staining 1 point, "spit test" 1 point, SSA (Ro)+ 3 points, lip biopsy + 3 points.

• ESSDAI (Eular Sjogrens Syndrome Disease Activity Index), which breaks systemic features of Sjogrens down by domain.

Other topics included lymphoma risk factors, neuropathy, and biologic drugs.

Dr Johr fielded many questions afterwards. Both marijuana and diet were brushed aside pretty quickly, but the latter - diet - was picked up again just as quickly afterwards by Steve Taylor, CEO of the Sjogrens Syndrome Foundation, who emphasized how very important they consider diet especially as an area for research in Sjogrens. 

SSF National Patient Conference (Denver... Friday afternoon... 1/3)

I flew in to Denver last night from Seattle. Flight arrived just before 11, and my eyes were shot. The only thing worse than flying with my sclerals IN, is flying with my sclerals OUT, so I opted for in... but it was bad. Then it got worse. Arrived 11pm, walked what felt like miles in the airport, squinting, froze to death outside in the thunder, sleet and snow trying to connect with my Uber driver who could not for the life of him figure out which level he was on and would drive away as soon as I got in an elevator up or down, and walked into a hotel room that had air (none too warm) blowing like crazy. So glad to pry those lenses off my eyes and drop into bed about 1am.

This is actually my first time attending the Sjogrens Syndrome Foundation's national patient conference. What an event!

There are more than 450 people attending (mostly patients), and based on the show of hands during one of the introductory presentations, the vast majority have traveled in from out of state! I've spoken with several people already who have traveled to two or more of these meetings. 

There's a nice exhibit hall, but some conspicuously absent companies! Oasis, where are you? Allergan, Alcon? Geez. The only ones here doling out eyedrop samples - a must at any major event for people with dry eye, after all - are Theratears, whose ads, incidentally, seem to be everywhere of late.. But Eye Eco are here, and 7Eye/Ziena. And they are both mobbed nonstop. In fact, I came planning on borrowing a corner - a small corner - of 7Eye's table, to be able to chat with people, but when I saw the deluge, I just blended in and chatted to everyone about dry eye glasses until I managed to make a break and get out of the way....

It was really great to reconnect with the Sjogrens Syndrome Foundation staff after many years! It's just amazing to me how they've grown. When I first got to know them, they were a fraction of their current size. The types of research and advocacy work they are doing these days, among other things, are just amazing.