Saturday, July 15, 2017

Who gets dry eye and why?

Sidebar: Happily back in the saddle, yet heading in new directions

I have really, really missed writing about dry eye these last couple of way-too-busy years. So it's been terribly fun finding a new stride with a self-imposed daily writing schedule for Dry Eye Awareness Month.

The rhythm I seem to be getting into is that, for every conventional sounding dry eye topic I start to tackle, I cast an eye over the vast array of readily available information online (good, bad, and indifferent), then rather than attempting to distill it into something useful, I gently set it all aside, and then go full tilt at some totally neglected aspect that particularly interests or concerns me personally, on behalf of patients struggling to navigate the dry eye world. So that is what you can expect on today's topic and probably everything else coming down the pipeline through the end of this exciting month.

— Rebecca

A nod to epidemiology and all that... jazz

When you talk about who gets a disease and why, it's all about statistics and the field of epidemiology, which among other things seeks to establish "incidence" and "prevalence" and "risk factors" (how many people is it happening to, and what things they have in common), and grapples with all the inherent problems of trying to establish those things for a particular type or category of disease.

I was thrilled to have the privilege of spending time with the TFOS DEWS II Epidemiology Subcommittee in Paris the year before last (as part of my responsibility to the Public Awareness and Education Subcommittee of the same project) just as they were getting underway with ambitious plans to update and revise the epidemiology section of the original DEWS report (2007). The team is absolutely amazing — I will not forget a single one of them. And I learned a lot about the process and challenges of trying to do meta-analysis on 10 years worth of diverse studies, and even got to have some input about topics we as patients could benefit from. Right now I'm literally counting down the days till the brand-new report is published! The epidemiology section is one of the ones I'm most anxious for everyone to have access to - two other favorites being Iatrogenic Dry Eye and Pain and Sensation.

Meantime though, I'm going to include the risk factors table from the 2007 report. Nothing terribly exciting, though I do think there are points of interest, for example, the fact that while there is "mostly consistent" evidence that older and and female sex are risk factors, evidence for menopause itself being a risk factor is unclear.

... Moving on to areas of closer personal interest:

Not that I mean to brush aside epidemiology — not by a long shot. Once the report is in the public domain, I know I'll be writing up a storm about some of the new trends being revealed in the medical literature.

But... there's a more human side to this issue that I care about, and the epidemiology data that I'll be looking for is predominantly as it relates to this: the vast range of circumstances and ways in which dry eye occurs and plays out in real people's lives.

There are two aspects of this that I find particularly interesting.

First, the reality of WHO gets dry eye.

Statistics are just no good at conveying it.

Averages don't matter to an outlier or a resident of a slimmer column.

The reality of dry eye is so very, very far from the stereotypical menopausal women's club. 

MEN get dry eye and for all kinds of reasons, from twentysomethings who took a short course of Accutaine to thirtysomethings who had LASIK to fortysomethings with Sjogrens Syndrome (yes, men do get Sjogrens) to fiftysomethings with nocturnal lagophthalmos and CPAP to sixtysomethings after cataract surgery and right on down the decades. 

YOUNG ADULTS get dry eyes, with truly poignant impact at sensitive times of life. How would you like to be a college student or young person making your way in a career when your eyes are suspiciously red all the time or your computer time is severely limited?

CHILDREN get dry eye. Imagine being a parent of a three-year-old whose eyes dry out to such an extent that their vision is endangered. What's the best way to protect them overnight: do you tape their lids shut, or try to jury-rig a moisture goggle designed for adults, or re-apply salve every hour through the night?

WOMEN IN PERFECT HEALTH get dry eye. No auto-immune disease. No medications. Ideal diet and fitness. These women put me to shame with how well they have looked after their bodies over the years, and yet, this happened. Why?

PEOPLE WHO TOOK EVERY PRECAUTION get dry eye. The ones who underwent an elective surgery (vision correction, or cosmetic eyelid surgery, for example) only after extensive research, careful selection of a highly qualified surgeon, and thorough screening. Chances are that the phrase "dry eye" mentioned in the consent form did not convey the practical reality of how dry eye can play out.

Second, the dry eye 'acceleration' process. 

I'm not quite sure what else to call it, but it's a phenomenon that fascinates me. I mentioned briefly the other day something about the fact that there's a vast difference between mild bit-of-a-nuisance dry eye and DRY EYE, all caps. One of my big areas of interest is exactly how people move from the former to the latter category. 

Incidentally... most people in the ALL CAPS dry eye category are intimately acquainted with the distinction between these two things because most have had well-meaning friends and family say things like "Oh, yes, I have dry eyes too. You should try some eye drops. Works great." To which one can only smile and try not to roll one's eyes too visibly, as the other party just doesn't get it. There's dry eye, and there's DRY EYE. Different animals.

Now to clarify, when I talk about an acceleration of dry eye, I don't necessarily even mean the eyes getting drier. I only mean a fairly dramatic change in the symptoms one is experiencing — which may, or may not, be occurring in parallel with a change in the nature and/or severity of one's clinical presentation of dry eye.  

I'm a 'pattern-seeking' kind of thinker, always lining up data, including stories, in my mind to glean the factors in common. And the pattern I have come across constantly in dry eye is that of people who had more than one pre-existing conditions and/or risk factors but no seriously bothersome symptoms until along comes a reasonably clear 'trigger', something that appears to have pushed them over the edge into full-blown, life-altering dry eye symptoms, which, when they are not easily reversed, can so easily end up precipitating an actual life crisis. By life crisis, I mean that period, thankfully not permanent, when dealing with dry eye takes over your life for a while and, in doing so, probably knocks you clean into a significantly anxious, depressive state for awhile. I'll be talking more in a few days about how the latter part plays out.

Anyway, I've heard these stories echoing that triggering process day in, day out for many years. Sometimes the people experiencing it recognize this themselves, sometimes not. Sometimes the trigger is obvious, sometimes not. I just know that in the course of conversation, with those who get a 'sudden onset' of dry eye symptoms, there are almost always at least two or three noticeable things  about their history that make it clear they were at higher risk: a long history of contact lens wear, or a propensity to get styes, or hormonal fluctuations, or taking some eye medication chronically with a toxic preservative, or they have been told they sleep with their lids partially open, or they had LASIK ten years ago, or they have facial rosacea, and on, and on, and on.

The common thread is the absence of bothersome symptoms, so they didn't necessarily have any clue about what might be brewing. That's not to say that it's always preventable anyway. But it would be good to have more data on these less obvious risk factors in order to educate people on simple ways to exercise prevention. 

Which takes us right back to... epidemiology studies. Can't wait for that report! 

Thursday, July 13, 2017

What is dry eye like?

I recently invited members of our Facebook DryEyeTalk group to respond to the following: "Describe (a) how your eyes feel, and (b) how that impacts your quality of life." The following is a collection of the responses:
They are irritated, hurt and feel dry almost all the time. This lessens the quality of my life because wind, sun and everything else make them feel worse. The dramatic redness these problems cause makes me self-conscious and depressed.
My eyes feel like rocks- dry, gritty, and hard. They burn and make my head ache. I am a prisoner inside my house wishing I could enjoy the sunshine and cool breeze.
I am blessed to not have daily pain, as many describe.... My life has changed. Clear vision and vigilance on sclorel lenses/fluids dictate everything I do. Safety glasses outdoors in slightest breeze, monitoring humidity indoors, how long I'm in a store atmosphere.... too many things to list. 
Eyes are sore and ache all the time. Also so dry I can no longer enjoy simple pleasures such as going out on a windy day, a cup of coffee, a glass of wine. Can no longer read. Quality of life has drastically decreased. Also suffer from headaches now due to dry eye.
My dry eyes began 12 years ago & have worsened since then. My left eye, the far more miserable one, burns & feels parched, more so as the day goes on. I find I am avoiding evening plans since my eyes fatigue me so much & increase my chronic headaches. I wish I could cry but no tears come.
My dry eye has resulted in an ulcer on my cornea.My vision is gone in that eye and there is only 1 Dr. In U.S. that could possibly help. He happens to be over 1000 miles away and does not accept insurance. I really can't afford to go.Ive turned into a semi recluse because of my eyes.
My dry eyes began at age 20 and for the last 32 years have become worse and worse. I feel my eyeballs all the time, gritty, sticky, bad vision, and now the pain has become central, meaning it's triggered the trigeminal nerve to produce pain in my face and ear and eye (the latter feeling like pins sticking in there). I'm on 3 different medications to calm the eye/face pain down.
My eyes burn almost constantly. My vision is blurred from lack of tears. Bright lights actually hurt my eyes and trigger very bad headaches. I am seeing a specialist who is making me somewhat more comfortable but will not cure me with the technologies we have at this time. This is a very time consuming and expensive condition. We are ripped off by insurance co's not covering our expenses.
My eyes burn and feel gritty, and when they get bad my life becomes "smaller." I stop enjoying time with friends and family, and I don't try new activities, because my confidence level drops. I become a hermit. BUT, I am fortunate that attentive people have stepped up to show me how to navigate many of these problems.
Burn burn lots of days Sensitive to light. Can't read or do phone when they r that way. Eyes aren't clear. Glassy looking. Red too. Sunglasses evening too DED has destroyed my career ambitions and hopes for having children, interfered with relationships, and robbed me of the ability to enjoy even small things in life. It is hell on earth.
My eyes get so dry when I'm sleeping (even with ointment and drops) that my eye lids stick to my eyes. I wake up numerous times per night and need to carefully add drops to free my eye lids. If I happen to quickly open my eyes or if the sticking is really bad, I will get nasty abrasions on my eyes that cause severe pain, eye lid swelling (I look like I've been punched), watering, light sensitivity, etc. The abrasions, when they happen, will hamper my activities that day and I am not able to have optimal rest each night.
On my worse days it feels like I have glass in my eye or someone scratched my eye, on my best days I have only slight pain. They have affected my life by turning me into a homebody that stays in a dark room without heat on because that is most comfortable. I no longer do activities I used to do because the movement of my body creates air that dries my eyes out. I drive only short distances and travel is out of the question due to the fear of a pain flare up.
Feels like I have dried out contacts in my eyes, blurry like I don't have my glasses on and dull pressure. It's made worse by computers and other cellular devices. Affects driving any time of day and working in the afternoon. Night driving is very painful- even if I could drive at night.
My eyes feel like foreign objects in my head. They burn, sting, ache, scratch, itch, and cause crushing headaches, earaches, and sinus pain. 
My eyes are dry due to a lack of tears, which causes blurry vision that oftentimes is near debilitating. Its hard to do anything when you can't see and it is depressing as glasses can't fix it.
Dry eye has caused me to withdraw from life. It has affected my relationships with friends and family. I dread waking up in the morning and start watching the clock at 9PM looking forward to closing my eyes. My quality of life has been compromised and I dwell in a state of depression.
My eyes used to be my best feature. Now they look diminished and vacant. I can't wear any eye makeup so I just keep the sunglasses on. It just looks better.
Sore, dry, gritty, extreme discomfort with even the slightest breeze. Sometimes I just have to keep my eyes closed because it hurts too much to keep them open. Many activities are off limits. Forget doing anything outside unless I can wear goggles. I don’t go anywhere in the evening. I stay home much more than I would like.

Wednesday, July 12, 2017

What IS dry eye?

My take on dry eye.

I love to rotate things through the proverbial kaleidoscope, look at them from all different angles, and then try and come up with a sort of working composite. That's what I have attempted here for dry eye, from a layperson's perspective and on behalf of patients, because where my education-loving heart is planted is in helping patients and doctors understand each other better.

Patients, if you are new to dry eye — if the only thing you know is the term, without some of the basic physiology of it — I would encourage you to (a) Google it and look specifically for general information on the three layers or components of the tear film, and/or (b) glance through an article I wrote long ago called Dry Eye for Dummies.

A brief digression first...

There's dry eye... and there's DRY EYE. I mean, there are people whose eyes start bothering them a little bit late in the day or whose contacts don't stay comfortable for more than eight hours or whose eyes water in the wind... those are typical dryness symptoms which often seem like no big deal to them and thus they may go ignored (other than occasionally being doused with drops) for years at a time.

Then there are people whose eyes are uncomfortable morning to night, and quite possibly night to morning. That's a different ballgame altogether. I've spent many years working with this latter group, whose ranks are constantly being swelled by those who originally have very mild or infrequent symptoms for some time... but then something happens to push their quietly brewing dryness suddenly over the edge into a condition that starts actually impacting their life. 

In promoting dry eye awareness, one of my hopes is that more people at risk of a severer form of dry eye will get more educated about prevention early in the game.

Rebecca's definition of "Dry Eye" (as a disease)

Dry Eye is a failure of one or more parts of the tear systems encompassing production, distribution, and drainage (i.e. lacrimal glands, meibomian glands, goblet cells of the cornea & conjunctiva, eyelids, and puncta) to perform some or all of their fascinating, multi-faceted jobs to such a degree that the patient's eye comfort, eye health, and/or* vision are compromised enough to matter to the patient, doctor, or both.
Simply put: Anything that goes wrong enough with your tear film to matter to someone — which may or may not involve any actual lack of tears.


  • The common-or-garden-variety dry eye patient whose lacrimal glands are mostly fine but their meibomian (oil) glands are chronically clogged, resulting in rapid tear evaporation and constantly uncomfortable eyes.
  • The cancer patient whose lacrimal and meibomian glands are irreparably damaged by disease, treatment, or both, leaving their corneas vulnerable to all the effects of excessive drying.
  • The patient whose tears create a constant burning sensation because they don't have the right balance of components.
  • The patient whose eyelids were left partially open by a lid surgery, with the result that their tears evaporate too quickly. 
  • The patient with a leaky CPAP mask blowing onto their eyes all night in conjunction with their lids naturally not fully closing while they sleep, with the result that they dry out very quickly.
  • The patient with Bell's palsy or damaged eyelid muscles, who can't blink and therefore isn't pumping out tears and whose corneas are constantly exposed.
  • The patient with a little mild MGD but also huge puncta so their tears disappear down the drains much faster than normal.
  • There are, I am sure, hundreds of variations on these themes!

*I understand that and/or is not a correct grammatical construct. In fact, I learned this anew in some extraordinarily interesting (but also confidential so I won't get into it) deliberations over a dry eye disease definition on an altogether different scale once upon a time. It may not be usable in scientific circles but for me, it's a lot handier than going into grammatical contortions to try and convey the same thing, ultimately less effectively. You just can't be too exclusive with dry eye because there really are so many variations on the theme.

Rebecca's definition of "dry eye" (as a phrase)

"Dry eye" is a thoroughly entrenched and therefore unavoidable yet inaccurate and trivializing misnomer whose ubiquitous use with reference to heterogeneous disease states of the tear system and/or the symptoms ostensibly related thereto frequently works to the detriment of patients.

Simply put: Welcome to my soapbox. 

For patients with moderate to severe symptoms, the term "dry eye" is a subtle but constant impediment to effective communication between dry eye patients and their healthcare professionals (both eye specialists and others) as well as their support systems. For patients who are 'merely' at risk of dry eye, this term can cause a great deal of harm by obscuring the understanding of risks and benefits. Try asking someone who got dry eye from an elective eyelid or laser eye surgery, or a short course of Accutaine, or a vasoconstrictor (redness reliever) or one of the older glaucoma eyedrops how well they think they understood what dry eye might be like. Hence the soapbox.

What does the medical-scientific world say that Dry Eye is?

Some conventional, user-friendly descriptions that don't strain the brain...

(American Academy of Ophthalmology)
If your eyes do not produce enough tears, it is called dry eye. Dry eye is also when your eyes do not make the right type of tears.
(Mayo Clinic)
Dry eyes is a common condition that occurs when your tears aren't able to provide adequate lubrication for your eyes. Tears can be inadequate for many reasons. For example, dry eyes may occur if you don't produce enough tears or if you produce poor-quality tears. 
Similar definitions are to be found everywhere. In various guises, you'll find the same concept, i.e. it's all about tear film quantity or quality (or both). It interests me that these almost always refer exclusively to tears, and almost always put aqueous deficient dry eye (i.e. inadequate tear production) first, even though for the majority of dry eye patients, that's not the issue!

Now for a polar opposite:

Or the elite international scientific community consensus definition....

According to TFOS Dry Eye Workshop II (DEWS II), and as presented in May as a teaser in advance of their full report being published July 15th, 2017 in Cornea:
(2017) Dry eye is a multifactorial disease of the ocular surface characterized by a loss of homeostasis of the tear film, and accompanied by ocular symptoms, in which tear film instability and hyperosmolarity, ocular surface inflammation and damage, and neurosensory abnormalities play etiological roles.
Bit of a mouthful, and obviously not intended for patients' use particularly, but it certainly conveys the complexity effectively. (By the way, keep an eye out for patient materials that TFOS will be producing subsequent to the publication of the report itself.

In the context surrounding this newly-minted definition, though — into which, incidentally, none of you will ever know how much time, labor, study and debate has gone — is something exciting and very relevant to all of us, and that is how very, very much the scientific community's understanding of dry eye disease has evolved and grown in just the last ten years! This means progress and good things for all of us.

As a marker, here is the definition in the original DEWS report, published in 2007:
(2007) Dry eye is a multifactorial disease of the tears and ocular surface that results in symptoms of discomfort, visual disturbance, and tear film instability, with potential damage to the ocular surface. It is accompanied by increased osmolarity of the tear film and inflammation of the ocular surface. 
At first glance, the new definition looks suspiciously like a reshuffling of the same old words and phrases — osmolarity, inflammation, surface damage, and tear film instability. But it has a substantially different orientation and emphasis; it's less restrictive and substantially more flexible in what it encompasses; and it acknowledges the neurosensory aspect for the first time, which is a huge stride forward. Many dry eye pain patients of long standing will be keenly aware that terms like 'corneal neuralgia'  or 'corneal neuropathy' were virtually unknown if not as yet uncoined in ophthalmology practices at the time of the original DEWS report. (Incidentally, TFOS DEWS II has an entire section devoted to pain and sensation which is terribly exciting.) We've come a long way!

So it's evolving and will continue to. 

Progress is being made constantly, and we've seen a huge increase in resources being poured into dry eye research in recent years. Excellent trends and long may they continue!

What do YOU say that dry eye is?

There's the medical side, and there's the real life side. Most of us patients are less concerned with details of the medical side than with how we are affected — how it constrains our day to day lives. So tomorrow, we'll be exploring the surprising range of dry eye symptoms and hear from patients about what they mean to their lives.

Tuesday, July 11, 2017

TFOS DEWS II... and a dry eye briefing for Congress!

TFOS DEWS II is an exciting international medical consensus project spanning nearly two years of work by well over a hundred top researchers and clinicians from around the world.

The fruit of their efforts, a lengthy report on everything from dry eye pathophysiology to treatments to everything we know about pain and sensation in dry eye disease, will be released July 15th in the ophthalmology journal Cornea. I've been privileged to serve on their public awareness and education committee and am so thrilled to see this long awaited day approaching. Chomping at the bit to start getting this much needed information into the hands of the people who need it most!

Meantime, on Wednesday, July 12, TFOS are giving a congressional briefing, with highlights of the report!


TFOS Press Release 

Dry Eye Advocacy Dreams

That those without dry eye who are at high risk can learn enough about the reality of dry eye and the associated risk factors to take preventive measures (like not using "get the red out" drops, not abusing contact lenses, avoiding elective surgeries and drugs that carry the highest risks, or seeking out the safest variations and providers of elective surgeries).

That those with dry eye, mild or undiagnosed, can learn enough to pay attention to symptoms, start asking the right questions and start looking for the right kind of doctors (like people with watery eyes that don't understand tearing can be caused by dry eye).

That those with dry eye, diagnosed and significant but without a sufficiently accurate or detailed diagnosis to guide them to effective treatment options, can learn enough to ask more questions and seek better expertise (like all the people who are told simply that they have "dry eye", which, I always say, is about as helpful as a cardiologist diagnosing you with "heart disease"... details are vital).

That those with dry eye, diagnosed and treated, but struggling with the life impact, can have ready access to local and internet resources - information, community, and supportive medical care, to help them keep moving forward steadily. That they can find low-or-no risk palliative strategies and products to help manage discomfort and improve quality of life while they navigate treatment options.

That those struggling with severe eye pain or other debilitating symptoms can gain from others' experiences to learn strategies for coping in the moment, with the knowledge that it won't last forever.

That those who have lost hope can find hope through the caring hearts of those who come alongside them in the dark times.

That those who have come out the other side can find easy and effective ways to share what they've learned with others who are just getting started.

That eyecare professionals can grow in both their medical knowledge of dry eye and their practical understanding of the quality of life impact of dry eye, in order to better meet their patients' needs.

Dry Eye Awareness Month 2017

It's that time of year!

This time last year, I was awash in saline, thrashing around trying to figure out how to reshape my DryEyeShop business in the wake of the tsunami of consumer needs - mostly for information and reassurance! - that hit us when Unisol 4 was discontinued. I barely remember noticing the months slip in and out.

Here I am a year later... absolutely chomping at the bit, with newly formed, large, ambitious dreams to make a difference in the world of dry eye needs. There's still some business needs clutching at me desperately but I am making consistent strides in getting it staffed up and more independent and am absolutely determined not to wait any longer to jump back into my first dry eye love, which is education and advocacy. So brace yourselves... July 2017 is just the beginning!

For the remainder of July, though, we're going to do a little bit of an internet dry eye education blitz.

Every day, we'll cover a new topic. You'll see each new topic here in the blog as well as on DryEyeZone's Facebook, Twitter and Pinterest accounts and, if you subscribe to KeratoScoop, you'll also be getting my weekly bulletins summarizing what's going on.

Here's the lay of the land for what's coming:

Week 1 (7/12-18): Facts about dry eye

Daily topics will run the gamut from defining dry eye - both from our perspective as patients, and from a medical research perspective, including the all-new definition of dry eye disease as published in TFOS' DEWS II (whose whole report is also being released this month in Cornea!) - to symptoms, diagnosis, treatments, management, and mental health implications.

Week 2 (7/19-25): Getting help for dry eye

Topics in week 2 will start out focusing on prevention then get into lots of practical strategies for getting good medical care and peer support, as well as managing symptoms at different times of the day, and once again discussing mental health aspects.

Week 3 (7/26-31): Helping others with dry eye

Week 3 takes us into my favorite - advocacy topics. How do we help other patients and what can we do to encourage better research, help get effective drugs available faster, help increase awareness of non medical disease management topics, help get better consumer products designed? And how do motivated, qualified doctors equip themselves to meet our needs?