Category: Blog Posts

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You’ve heard it many times before.

“Why don’t you just use eye drops. They sell them in every drug store. Or that drop they advertise on TV all the time… something with an R?”

And then you say, “Restasis. I tried it. It didn’t work. And lubricating drops don’t work either.”

Or maybe you don’t say anything because you’ve said it all before…may times. And you’re just tired of hearing the same old thing — advice from well-meaning people who have no idea what you’re going through, or how to really help Dry Eye patients.

Chin up. We’ve all been there.

Even so, it can be a real problem when those offering advice are the ones who control your life, deciding which doctors you should see, and which treatments you should have. If they think lubricating drops are all you need, it can be a real uphill battle.

When that happens, you have to stay strong and forge your own path to healing.

Why People Think They Can Help Dry Eye Patients

But why do so many people think they know so much about Dry Eye when in fact they don’t? Why do they think they can help Dry Eye patients, when even some of the best doctors can’t?

One reason is the term Dry Eye. It’s an imprecise term for a host of conditions that can co-exist but that just doesn’t sound that bad. It’s not as serious as cancer. And it’s not an emergency like a heart attack. So what it is it? Just a little dryness in the eyes. Right?

Not exactly.

Not when it’s severe.

Unless they’ve had it, or know someone who has, most people would never imagine that Dry Eye can change the course of someone’s life, impact relationships with family and friends, end careers, destroy quality of life, and control every moment of every day.

After all, it’s just Dry Eye. It’ll go away on its own. Right? Probably no.

Not that the only issue with Dry Eye is the term. Many people, for instance, have a real hard time getting a thorough diagnosis. Perhaps that’s the biggest issue. Because unless every co-morbid Dry Eye condition is diagnosed, and treated, you won’t feel better.

But still, the term does make a difference. Here’s why.

Dry Eye Spectrum Disorder

Consider autism spectrum disorder. It’s now generally accepted that with autism spectrum disorder a wide range of symptoms and severity are possible. Some children and adults are high functioning. But others aren’t. If properly diagnosed and intensive treatment starts early, the Mayo Clinic says that a big difference can be made in the lives of many affected children.

What if the same were true for Dry Eye patients? Some are high functioning, and others aren’t. What if everyone understood that Dry Eye is a spectrum disorder with a wide range of symptoms and severity?

First, if a friend told you to use an OTC eye drop, you’d be able to simply say you have Dry Eye spectrum disorder, and that at your end of the spectrum lubricating eye drops just aren’t enough. Being able to offer a simple explanation like that alone would be a relief.

More importantly, more doctors would readily accept that not all Dry Eye patients are alike. Those with mild cases of the disease might need nothing more than lubricating drops or lip wipes. But others, with more severe cases and other co-morbid conditions of the ocular surface, should undergo comprehensive diagnosis and treatment. And if treatment would start sooner — and no one had to embark on a heroic quest to find a doctor — maybe a big difference could be made in some lives.

When Something Doesn’t Have a Name

But unless Dry Eye gets a name that describes its complexity, things probably won’t change. Doctors won’t believe our far-flung, mysterious symptoms, and well-meaning friends will continue to tell us about those lubricating drops. Because when something doesn’t have a name, it’s very difficult to talk about, analyze, and understand. If it doesn’t have a name, you can’t point to it or point it out. It’s practically invisible… like so many Dry Eye patients.

So rather than use terminology that focuses on tear film (as in Dysfunctional Tear Syndrome) or the chronic nature of the disease (as in Dry Eye Syndrome), the medical community could adopt the term Dry Eye spectrum disorder. This way, those on the far end of the spectrum would get the attention they need, and those on the near end would have a better chance of staying there.

References

Autism Spectrum Disorder
Diseases and Conditions
Mayo Clinic
Retrieved January 17, 2017
View the full report

Ocular Surface Disease: Cornea, Conjunctiva, and Tear Film
Part 2: Diseases of the Ocular Surface
EJ Holland, MJ Mannis, WB Lee
Saunders Elsevier, 2013

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If you’re a Dry Eye patient still looking for a New Year’s resolution, below are 10 different ones to pick from. You can tailor any one to your specific situation.

Or maybe you’ll be inspired to make up your own. Either way, don’t miss our #1 New Year’s resolution for Dry Eye patients below.

#10. I will stay hydrated and drink plenty of water.

Staying hydrated is important because the eyes secrete 5 – 10 ounces of water each day. If you’re dehydrated systemically, you won’t be producing the tears you need.

#9. I will take frequent breaks while reading anything including my computer/smart phone/tablet/etc.

When we read, whether it’s a book or smart phone or other device, we tend to blink less than when we don’t read. Taking frequent breaks gives you a chance to rest your eyes, blink more often, and replace the tear film that evaporated while you were reading.

#8. I will remind myself to blink when I’m on the phone.

We sometimes stare into space when we talk on the phone. Some patients cope by keeping their eyes closed whenever they’re on the phone. That might work for some. But for others, it might work best to remember to blink.

#7. I will touch my eyes only immediately after washing my hands.

Dry eye patients tend to touch their eyes a lot. For some, there are endless eye drops, ointments, or warm compresses. For others, there are contact or scleral lenses. Whatever the reason, make a vow to always wash your hands first. Introducing bacteria into or around the eye is the last thing you want when you’re already suffering with Dry Eye.

#6. I won’t panic if I feel a new symptom.

The eyes have the highest concentration of nerves – 300 to 600 times more than any other part of the body. The tiniest spec of makeup or a particle of dust can feel like a boulder. So it’s no wonder that, as our condition changes, our eyes feel different things. Don’t panic. But do tell your doctor what’s going on so the new symptom can be evaluated and treated if necessary.

#5. I will be kind to other Dry Eye patients.

We see all too often Dry Eye patients attacking other Dry Eye patients on social media and other public forums. This saddens us to no end. Remember, we’re all just patients, suffering with Dry Eye symptoms. And every patient deserves compassion and understanding. So vow to be kind to other patients. You never know who might be suffering from so much pain that they’re thinking about ending it all.

#4. I will tell my doctor what’s going on.

No doctor is clairvoyant. It’s imperative that doctor’s know what’s going so they can take appropriate steps to help you. Only you can tell your doctor what’s really going on.

#3. I will describe my symptoms very specifically.

This is a variation of #4 above, because doctors really aren’t clairvoyant. If you say, “my eyes feel awful,” your doctor won’t be able to help you much. But if you say, “there a stabbing pain in my right eye, lower lid, outer corner, and my lid margins burn,” your doctor may have a very good idea about what’s going on. With that information, she’ll be able to diagnose and help you.

#2. I will not give up until I achieve comfort in my eyes.

This really could have been our #1 New Year’s resolution for Dry Eye patients, because so many of us struggle to achieve comfort. The fact is, many of us were in very bad shape once. But we didn’t give up. And we’re here to tell our stories of hope. We speak from experience when we say that it’s important to persevere and not give up!

And now our #1 New Year’s resolution for Dry Eye patients.

#1. I will learn everything I can about my condition.

Knowledge is a crucial tool on the journey to healing. It’s like water in a hiker’s canteen. It nourishes and refreshes. It gives strength. When the canteen is empty, it’s not so good.

When you drink in knowledge, you give yourself power. You become the master of your own destiny. You have the means – the nourishment – to achieve your goal.

When you learn how the eyes work, what a blink does, what your eyes secrete, and then you learn about your symptoms – what they mean and how they can be treated – you’re moving out of a position of weakness and into a position of power.

With knowledge, you can ask your doctors better questions and discuss your treatment plan. You’ll have the confidence to think about your symptoms – carefully and thoughtfully. What’s causing them? How long will they last? Can you do something about them at home right now? Anything? Why or why not?

Knowledge is Power

When you learn about Dry Eye, you’ll begin to understand that you aren’t alone. There are others out there just like you. And the more we all collectively know about the disease, the better patients and patient advocates we will be.

And there’s no excuse for not learning about Dry Eye.  There is plenty of free information on this website to empower anyone who is interested and willing to learn. We’ve even provided an audio button so that Dry Eye sufferers don’t have to read. So no excuses, from patients, their families and friends, and even doctors.

Knowing a lot about a disease — any disease —  transforms a patient into a partner in their own health care. There’s a saying, “Knowledge is power.” Seize the power. It’s right here at your finger tips.

Symptoms       Causes        Diagnosis      Treatments

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Dry Eye is the worst houseguest ever for one very simple reason. It never comes by itself. It’s always dragging around countless other family members who want to stay for a long, long time.

Think you’re only hosting aqueous deficiency?

Think again.

There’s probably some meibomian gland dysfunction lurking around your eye lids.

Maybe even a bit of conjunctivochalasis — or chalasis for short — right on the eyes.

How about a few demodex mites? Have enough room and food to house them for a while? Sure you do. We all do. Especially as we get older.

What about that recurring pink eye? Why does that keep coming back? Didn’t you just give it $60 to go off with those antibiotic eye drops and give you some peace and quiet for a while?

Or that pain in the corner of your eye that sometimes feels like a knife and sometimes feels like an eye lash. What’s that all about? So rude to show up uninvited.

Still not Convinced that Dry Eye is the Worst Houseguest Ever?

There’s that feeling of soap and those frothy tears. How long have they overstayed their welcome? Wait, they never were welcome. Now it’s impossible to get them to leave… once and for all. Somehow they keep finding their way back. How?

Are your eyes red? Do they feel awful after you’ve been working or looking at a computer screen for a while? What about your eyelid margins? Are they white and shiny like porcelain, or does it look like someone’s been leaving their dirty dishes lying around. All of that debris. Endless, endless debris in the eyes and eyelashes. Don’t they know how to clean up after themselves?

And speaking of endless, what’s up with all those eye drops or warm compresses? At least the compresses are relatively cheap. But the eye drops… seriously? How much does it cost to keep one single drop happy?

Are your eyes watery? Do you blink all the time? Does it feel like something’s just stuck in there forever and won’t come out? Something gritty or perhaps even a sheet of tissue paper? Yep, that’s exactly what we’re talking about — the houseguests that never were invited and now just don’t know when to leave.

More Reasons Why Dry Eye is the Worst Houseguest Ever

And it’s not as if these houseguests aren’t cramping your style. You probably haven’t sat down with a good book in ages, or watched a TV show without interruption. Thank goodness for Netflix and the pause button.

Sometimes they even get in the way of going to work. But you have to work, because who else is going to support this unwelcome crowd.

And after all that work, you’d think they would at least let you have some time to yourself. But no. When was the last time you went to a movie theater? Ride that motorcycle lately? Sat in front of a fireplace? Even your choice of restaurants, if you can still go out to eat, is probably a lot smaller these days. If it’s any consolation, at least you have your favorite warm compress at home to keep you warm, because sometimes even your pets have to go to make room for these awful houseguests.

But in reality it’s no joke. Dry Eye, and its many relatives, can cause untold devastation. Truly heartbreaking devastation and immeasurable physical and emotional pain.

Good Riddance to Dry Eye, and Good Night

And as far as pain goes, the only good thing about it is, once it’s gone, at least you can’t remember it. You can remember that you had it. But you can’t actually feel it. Plus when the pain, or whatever you’re feeling, is gone, probably some relative of Dry Eye is gone too.

And to that we say good riddance, good bye, and good night!

And to everyone else Merry Christmas, Happy Hanukkah, and joyful holidays! May you all have many, many, many good eye days.

We’ll see you again next year.

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Patients often complain that even after they’ve started treatment, their painful Dry Eye symptoms don’t stop. Their symptoms may be constant or intermittent. There may be burning, pain, a foreign body sensation, or other discomfort. It can be an agonizing 10, on a scale of 1-10. Or just an annoying 1. It might be in one eye or both. In one very specific spot, or all over.

The fact is, the pain and discomfort of Dry Eye can persist despite treatment and lifestyle changes.

Here are 12 reasons why Dry Eye symptoms don’t stop and sometimes just keep coming back.

1. It’s a chronic condition

The sad truth about Dry Eye is that it’s a chronic condition. One magic pill, drop, ointment, or single treatment usually won’t fix it. Once Dry Eye symptoms set in, it becomes a question of managing them, and finding out which treatments work for you. Some conditions associated with Dry Eye, like conjunctivochalasis or a bacterial infection, can be cured. But the chronic nature of the disease requires perseverance and patience.

2. It’s a multi-factorial condition

As mentioned above, many conditions are associated with Dry Eye making it a multi-factorial disease. There’s aqueous deficiency, meibomian gland dysfunction, infection, conjunctivochalasis, demodex mites, and more. And the causes of these are numerous. There are environmental factors, life style choices, systemic diseases, plus many other factors, all of which can contribute to the disease and symptoms. So if you only address one condition, you won’t get complete relief because something else that requires treatment will still be going on.

3. The eye feels only the most prominent sensation

Once you begin treatment – effective treatment – you can expect to get some relief. But it’s important to keep in mind that the eyes only feel the most prominent sensation — one sensation at a time. So you treat one symptom and then another symptom emerges. Why? It’s possible, and even probable, that a second condition was always there, but you just couldn’t feel it because it was masked by the symptoms of the first condition.

And this can even happen to either eye. You feel only the worst thing and let’s say it’s in your right eye. You treat that and now you have discomfort in your left eye. Whatever is now happening in your left eye was probably always there, you just couldn’t feel it because of the discomfort in the right eye.

If this happens, don’t despair. And let your doctor know that there’s a new symptom that requires attention.

4. Different conditions cause the same symptoms

One of the most confusing aspects of Dry Eye is that different conditions can cause the exact same symptom. For example, even after meibomian glands are probed there can still be a foreign body sensation or pain in the exact same spot. In this case, you may need more or deeper probing. Or maybe there’s inflammation or chalasis on the surface of the eye. Maybe there’s an eye lash that’s growing in the wrong direction, or a muscle spasm in the eye lid, or something else.

But it’s impossible to say exactly what’s happening without a thorough exam and an accurate diagnosis. So if a symptom persists, it’s important to follow-up with your doctor, because she can’t help you if you don’t tell her what’s going on.

5. You haven’t been diagnosed correctly so you aren’t being treated correctly

So many of us have had this experience. We’re diagnosed with something and we start treatment, but there’s no change in our symptoms. If your doctor didn’t start with a thorough examination in the first place, it’s likely you weren’t diagnosed accurately and so you’re also not getting treated correctly. If you think this is the case, it’s best to seek care with another doctor.

Check out the information on Dry Eye diagnosis on our website and familiarize yourself with what a comprehensive exam looks like. If you’ve only had a Schirmer test without numbing drops and your meibomian glands haven’t been examined, for example, you probably haven’t had a thorough exam.

Furthermore, conjunctivochalasis is often overlooked, neither diagnosed nor treated. And the role of meibomian gland dysfunction in chronic eye pain is not yet widely accepted and understood. If not treated, both of these conditions can cause chronic eye pain and discomfort.

6. Something hasn’t been treated…yet

If you have a good doctor and are undergoing treatment for a variety of conditions, he may recommend that treatments follow a specific order. First this treatment, then that, then another, depending on your specific set of conditions.

Be open with your doctor about your symptoms. Discuss the sequence of treatments and what you can expect. Your doctor may have something planned for you that you don’t know about, but it might be something that you shouldn’t undergo just yet.

7. Something new happens

You’re going along with treatment and you’re beginning to feel better, and then suddenly something happens that sets you back. It could be an eye injury, an infection, a systemic condition, something just falling in your eye, or who-knows-what else.

When this happens, it can feel like a major set back and you can easily get discouraged. Don’t. Life happens — to our eyes all the time. Take it in stride. Address it. Contact your doctor immediately even if your next appointment is in two weeks. Deal with it now, rather than later. Think of this setback as just another leg of your journey to healing.

But we agree, these setbacks can be exquisitely frustrating.

8. You may have allergies or sensitivities to topical medications

Your prescribed treatment could itself be causing discomfort, or even harm. If you have allergies, or even just sensitivities, to your topical medications, you might feel worse — and even get worse — rather than better. Allergies and sensitivities cause inflammation, and chronic inflammation is the enemy of the meibomian gland and the ocular surface.

It’s important to tell your doctor right away if you think your medication is exacerbating your symptoms. You might have to stay on it for a while. But your doctor may have tips to minimize symptoms. Or you might have to switch to something else, or stop it altogether. Regardless, let your doctor know.

9. Systemic conditions may play a role

There may be underlying systemic conditions contributing to your symptoms – autoimmune disease, hormone imbalance, and many others. If these aren’t addressed effectively, your eyes might not feel better. Talk to your doctor about what systemic conditions you might have. Some, like age, are unavoidable.

10. Are you telling your doctor about all of your symptoms?

Be sure to tell your doctor about all of your symptoms, and be as specific as you can about what you’re feeling. Rather than saying “my eyes feel awful.” Say, “my left eye burns and feels like there’s soap in it. A 4 (on a scale of 1-10). And there’s an intermittent stabbing pain in my right eye, in the upper inner corner. An 8, that happens right when I wake up and lasts for 2-6 hours, but sometimes all day.”

It may seem like a lot of information. But the details will help your doctor diagnose your symptoms accurately. And an accurate diagnosis is always the first step in effective treatment.

11. Your doctor isn’t helping you

You may have a bad doctor. Or your doctor may be a good person and a good ophthalmologist or optometrist. But your doctor may not know enough about Dry Eye to diagnose and treat you effectively. If that’s the case, it’s best to seek the care of a Dry Eye specialist or an ophthalmologist specializing in cornea and external disease.

12. Things happen and change over time

Lots of things change over time. We age. We change our daily habits. Our bodies change. We get new jobs. We move. There’s light and darkness. Dust or pollen in the air. Car exhaust. Seasons. Seasonal allergies. Seasonal flu. Changes in temperature and humidity. Binging on Netflix. Different foods and cooking fumes. The stress of work. Too much time staring at a computer or cell phone. Staying up late. Not enough sleep. A long drive.

Anything can happen. It can happen suddenly once, over a long period, or something in between. But all of it can contribute to eye comfort or discomfort.

So whenever possible, it’s best to make choices that lead to comfort, because the stuff that causes discomfort is sometimes unavoidable.

When Dry Eye Symptoms Don’t Stop

With so many different possibilities, it’s no wonder that even after starting treatment, sometimes painful dry eye symptoms don’t stop. When this happens it’s important to persevere, follow-up with your doctor, and not lose hope. We know this can be extremely difficult, and sometimes seemingly impossible. But step by step, inch by inch, you can reach your goal. It may be a long and difficult journey. But it will be worth it when you look at your loved ones or a sunset… with relatively comfortable eyes. You’ll thank yourself.

So choose comfort. Choose hope.

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Subscribe to our blog to keep up with Not A Dry Eye.

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🔊 Listen
For many Dry Eye patients managing the disease is the journey of a lifetime. Those of us who embarked on the journey to healing, know that lots of people helped us reach our destination. Family members, friends, neighbors, doctors, their staffs, pharmacists, nurses, shuttle drivers, even the mail carrier bringing a fresh supply of some critical medication, and many, many others, were all there for us when we needed them most.

Many people helped us in whatever way they could. Some opened their wallets, others their homes. Some people cooked for us and others cleaned. Some became our drivers and others traveled with us hundreds and even thousands of miles, staying with us in far-away cities. When the pain in our eyes was unbearable, there were those who Googled anything and everything related to the disease, searching for hope on our behalf. Some prayed with us and for us. Help came in many forms and on many days, many, many days.

And then there were our doctors who diagnosed and treated us. Some responded to our desperate texts, calls, and emails – at all hours of the night. Some held our hands or stroked our foreheads before surgery to reassure us. Their staffs took our calls and listened to us patiently.

Yes, it was their job, but it wasn’t always an easy job because the pain of Dry Eye could make us irrational, unreasonable, and inconsolable, crippling even the most stoic among us. Still, they helped us.

Our gratitude to each of these individuals knows no bounds. No matter what we do, no matter how hard we try, we will always be indebted to our legions of supporters.

On this day of giving thanks, we extend to each of them our deepest and most heartfelt gratitude. Thank you!

And now we’re asking for your support.

Supporting Dry Eye Patients on Their Journey to Healing

On average, about 250 – 300 people from around the world visit this website each day. Most are people just like us, looking for information about Dry Eye, wondering about their symptoms, wondering what might be the causes, and if there are any viable treatments.

We’d like to be able to continue this service and we’ll be able to with your generous support.

We don’t raise money through advertising of any kind because we believe it’s important to provide impartial information to patients.

Please consider donating just $3 to Not A Dry Eye Foundation this Thanksgiving via Paypal.

Or register on smile.amazon.com. Amazon will donate .5% of the purchase price every time you make a purchase (at no additional cost to you). Just select Not A Dry Eye Foundation as your preferred non-profit. It’s the same Amazon you always use, with the same prices.

Some of you have already made generous donations, and we’d like to thank you for your support. We receive messages all the time about how the information on this website is helping someone understand their condition. Your generous donation has made that possible.

Thank you!

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Send your questions and comments to blogger@notadryeye.org.

Subscribe to our blog to keep up with Not A Dry Eye.

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🔊 Listen
There’s a scene in the 2016 movie Miracles from Heaven that’s probably all too familiar for some Dry Eye patients. When 5-year-old Anna Beam goes to the ER for the umpteenth time with stomach pains, the doctor says it’s acid reflux. Anna’s mother, frustrated to no end by what she knows to be yet another wrong diagnosis, demands that the doctor run more tests because she’s not leaving until she knows, for certain, what’s wrong with her daughter. It turns out not to be acid reflux at all.

Medical research doesn’t always bet on the right horse, but medical research is what doctors rely on to inform the care they provide. Not that long ago eggs were the enemy. So was fat of any kind. Now we know that the decades-old study starting the trend that demonized fat was sponsored by, of all things, the Sugar Research Foundation (SRF).

Fat vs. Sugar

According to Sugar Industry and Coronary Heart Disease Research: A Historical Analysis of Internal Industry Documents, the SRF funded a literature review that was published in the New England Journal of Medicine back in 1965. That paper

singled out fat and cholesterol as the dietary causes of coronary heart disease (CHD) and downplayed evidence that sucrose consumption was also a risk factor. The SRF set the review’s objective, contributed articles for inclusion, and received drafts. The SRF’s funding and role was not disclosed. Together with other recent analyses of sugar industry documents, our findings suggest the industry sponsored a research program in the 1960s and 1970s that successfully cast doubt about the hazards of sucrose while promoting fat as the dietary culprit in CHD.

What does this say about studies funded by industries in other fields? Remember how the tobacco industry convinced doctors to prescribe cigarettes for anxiety in the 50’s and 60’s?

You can’t help but wonder about the results of studies sponsored by companies, and other stakeholders, that make the products they’re studying. Can we really believe there’s no conflict of interest? Can we know, for certain, that important data isn’t suppressed?

Finding it Hard to Trust Your Doctor

The Harvard sugar study isn’t the only example of medical research, and consequent medical care, that touts questionable, or outdated, facts. Regardless, these studies are what many doctors use to inform the care they provide. But when the studies aren’t good, or up to date, you might not get the care you need.

And then, bewildered, you might even end up finding it hard to trust your doctor, the way Anna’s mother did. It happens to Dry Eye patients all the time, especially to those of us who’ve gone from doctor to doctor to doctor, first just seeking care, and then later a “miracle.”

A Miracle for an Insurmountable Problem

But why does it have to get to that — seeking a miracle? Why does getting help for Dry Eye suddenly become an insurmountable problem?

We’re not really sure.

But maybe it’s because doctors aren’t experienced in treating Dry Eye and meibomian gland dysfunction as a unit, with a truly comprehensive approach to managing the signs and symptoms of these diseases.

Take for example the American Academy of Ophthalmology’s guidelines for these two conditions that often co-exist and overlap: Dry Eye and blepharitis. The academy publishes one Preferred Practice Pattern (PPP) for Dry Eye Syndrome and another PPP for blepharitis.

If a doctor refers to one, but not the other, the picture won’t be complete. It’s not that the guidelines are inaccurate per se (although they’re already out of date having been published in 2013 — a problem in itself). It’s that individually they’re not comprehensive enough to cover anything and everything that might be going on. One document just doesn’t go deep enough to describe all of the possible underlying or co-morbid conditions, and the latest effective treatments.

As a result, the care you receive could be inadequate. And so in addition to not feeling better after seeing who-knows-how-many doctors, you’re now finding it hard to trust your doctor, even a really good doctor, and maybe even the entire medical profession.

And that’s a fundamental problem. Because we need to trust our doctors, good doctors, who diagnose and treat us, so we don’t have to wait for miracles like little Anna Beam.

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Send your questions and comments to blogger@notadryeye.org.

Subscribe to our blog to keep up with Not A Dry Eye.

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🔊 Listen
Should patients be given a voice? Or should patients just accept what they are told by their health care providers, pharmaceutical companies, medical device manufacturers, insurers, and others?

Not that long ago, patients were expected to listen to their doctors and accept what they were being told at face value. It was believed that if patients knew too much about their own bodies, and the health care they received, they might become anxious or agitated in ways that wouldn’t be beneficial to them.

These days, patients act more like customers who know what they want. With out-of-pocket health care costs rising into the tens of thousands of dollars for some every year, it’s no wonder.

So why wouldn’t every health care provider, every pharmaceutical company, every medical device manufacturer, and every insurer, choose to listen to their patients, a.k.a. customers?

What Matters to People Seeking Health Care

This year the National Academy of Medicine gave its Gustav O. Lienhard Award to David Cella, PhD, of Northwestern University Feinberg School of Medicine “for his pioneering work to measure and apply patient-reported outcomes in health care.”

This is why NAM presented the award to Dr. Cella.

“Dr. Cella’s trailblazing work in investigating what matters to people seeking health care has paved the way for a better, more patient-centered approach,” said NAM President Victor J. Dzau.

During his career, Dr. Cella has made transformational contributions toward understanding what aspects of life matter most to people struggling with health conditions and measuring those aspects so that the information can be used to guide care. In 1985, he conducted in-depth interviews with cancer patients in order to develop questionnaires that could shed light on how cancer therapeutics were affecting patients’ lives, at a time when it was uncommon in oncology to ask patients how they were feeling. His efforts helped usher in an era in which it is common practice to include patient stakeholders both in the development of quality-of-life questionnaires and in the more general conduct of research and clinical care.

Whether or not the “common practice to include patient stakeholders” has been adopted by all health care providers, including those who treat Dry Eye patients, remains to be seen.

In the Spirit of Patient Participation

In the spirit of patient participation, we contacted the Tear Film and Ocular Surface Society (TFOS) earlier this year. We had learned that TFOS, the organization behind the Dry Eye Workshop (DEWS) and The International Workshop on Meibomian Gland Dysfunction, would be convening DEWS II to:

update the definition, classification and diagnosis of dry eye disease, critically assess the etiology, mechanism, distribution and global impact of this disorder, and address its management and therapy.

Given that nearly a decade had passed since the first DEWS papers — which we regard highly and often cite on this website — were published, we supported the effort wholeheartedly.

After contacting TFOS via e-mail, and offering to participate to ensure that the “patient perspective” would be included in committee meetings and publications, thereby giving patients a voice, TFOS declined our offer. The executive director told us the committee members had already been selected and that there were already many patients among them.

We admit that we had missed the deadline to submit candidates for participation. That’s absolutely true.

But when we reviewed the list of committee members, we found only two patients per se. The “many” others? Well, we can assume, based on estimates of the incidents of Dry Eye, that some of the committee members have some form of the disease. Though we just couldn’t figure out which ones they are.

Giving Patients a Voice

So, we decided to write a letter offering the Dry Eye patient perspective to all of the DEWS II committee members. We e-mailed the letter in July to over 100 committee members. Plus we cc’d dozens of other stakeholders and the media.

Download Giving Patients a Voice: The Not A Dry Eye Foundation Letter to TFOS DEWS II Committees.

View the Press Release

So share our letter. Download and forward it as many times as you like. Circulate it and discuss it. Post it on Facebook and talk about it on Twitter. Tell your doctors about it and even your government representatives. Send it to your local newspapers and favorite magazines. Share it with you family and friends.

Give yourselves a voice!

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🔊 Listen
In our first Research Roundup we present five studies. The first four, published this year, may give some Dry Eye patients hope. The fifth, from last year, reveals new insights about demodex mites.

The topics of these studies – lacrimal glands, quality of life, contact lenses, and demodex mites – themselves show how complex Dry Eye really is. There are many different conditions under the Dry Eye umbrella, a lot of potential causes, and numerous possible symptoms.

The first two studies discuss lacrimal glands in mice with Sjogren’s aqueous deficiency. One examines stem/cell progenitor cells as a potential treatment for chronically inflamed human lacrimal glands. The other looks at changes in aging lacrimal glands, and concludes that TSP1 (thrombospondin 1), is necessary for maintaining their health.

The third study is not about Dry Eye, but about vision and social status. It suggests that impaired vision can have a profound impact on quality of life. Dry Eye can affect vision. So clearly, the quality of life for these patients can be affected too. (The same could be said for those with Dry Eye whose vision per se may not be affected, but ocular discomfort has impacted their quality of life). For some, the impact can be devastating.

The fourth study looks at contact lenses and how bacteria can alter eye tissue. It should be of no surprise by now that contact lenses can cause inflammation and ocular discomfort. This study may lead to new therapies for inflammation due to eye infections.

The fifth study may interest you if you think you have demodex mites, and wonder where they came from. The answer is they were around way before humans inhabited the earth, and probably came from someone close to you. No wonder they can be hard to get rid of .

Lacrimal Glands, Quality of Life, Contact Lenses, and Demodex Mites

Lacrimal gland repair using progenitor cells
Gromova A, Voronov DA, Yoshida M, Thotakura S, Meech R, Dartt DA, Makarenkova HP.
Stem Cells Translational Medicine
2016 Aug 15. pii: sctm.2016-0191. [Epub ahead of print]

This study demonstrates, for the first time, that epithelial cell progenitors (EPCPs) can mediate functional recovery of the lacrimal gland in a Sjögren’s syndrome mouse model. These data establish proof of concept that endogenous stem/progenitor cell transplantation may be used to treat human lacrimal gland chronic inflammation.

Alteration in cellular turnover and progenitor cell population in lacrimal glands from thrombospondin 1-/- mice, a model of Dry Eye
Shatos MA, Hodges RR, Morinaga M, McNay DE, Islam R, Bhattacharya S, Li D, Turpie B, Makarenkova HP, Masli S, Utheim TP, Dartt DA.
Experimental Eye Research
2016 Sep 30. pii: S0014-4835(16)30308-6. doi: 10.1016/j.exer.2016.09.011. [Epub ahead of print]

We conclude that thrombospondin 1 (TSP1) is necessary for maintaining normal lacrimal gland (LG) homeostasis. Absence of TSP1 alters cytokine levels and stem cell transcription factors, LG cellular architecture, decreases cell proliferation, and alters amount of stem cell markers.

Visual function, social position, and health and life chances: The UK Biobank study
Cumberland PM, Rahi JS, UK Biobank Eye and Vision Consortium
JAMA Ophthalmology
2016 Sep 1;134(9):959-66. doi: 10.1001/jamaophthalmol.2016.1778.

Impaired vision in adults is common, and even near-normal vision, potentially unrecognized without assessment, has a tangible influence on quality of life.

New mechanism causing eye inflammation
Medical News Today
2016 June 21

According to Medical News Today, “researchers discovered that a common bacterial contaminant of contact lenses and cases can cause the formation of large bubble-like membrane structures on human ocular cells, which can contribute to contact lens wear complications and inflammation.

Contact lens use is a major risk factor for contracting microbial keratitis, yet the reasons for this increased risk are not well understood.

‘Use of contacts lenses is so prevalent, yet until now, we’ve had limited understanding of how bacteria, associated with contacts lenses and cases, damage cells on the surface of the eye. Our study paves the way for new therapies that alleviate inflammation associated with these often serious eye infections,’ said Robert Shanks, PhD, Associate Professor, Charles T. Campbell Laboratory of Ophthalmic Microbiology, Department of Ophthalmology, UPMC Eye Center, University of Pittsburgh.

The researchers observed bacteria including Proteus mirabilis and Serratia marcescens that cause eye and other infections, induce major morphological changes in the surface of epithelial and other cell types. ‘These changes look like large membrane bubbles on the human cell surface, noted here as blebs,’ said Shanks. Cells that experience the blebs do not survive.

Global divergence of the human follicle mite demodex folliculorum: persistent associations between host ancestry and mite lineages
Palopoli MF, Fergus DJ, Minot S, Pei DT, Simison WB, Fernandez-Silva I, Thoemmes MS, Dunn RR, Trautwein M
Proceedings of the National Academy of Sciences of the United States of America
2015 Dec 29;112(52):15958-63. doi: 10.1073/pnas.1512609112. Epub 2015 Dec 14.

Microscopic mites of the genus Demodex live within the hair follicles of mammals and are ubiquitous symbionts of humans… Phylogenetic analyses recovered multiple deep lineages including a globally distributed lineage common among hosts of European ancestry and three lineages that primarily include hosts of Asian, African, and Latin American ancestry… We found that D. folliculorum populations are stable on an individual over the course of years and that some Asian and African American hosts maintain specific mite lineages over the course of years or generations outside their geographic region of birth or ancestry. D. folliculorum haplotypes were much more likely to be shared within families and between spouses than between unrelated individuals, indicating that transmission requires close contact. Dating analyses indicated that D. folliculorum origins may predate modern humans.

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🔊 Listen
Have you seen the TV ads with Jennifer Aniston describing her dry, itchy eyes and telling you to see an eye doctor about your Dry Eye symptoms?

It’s an interesting twist on the typical “ask your doctor about this new drug” ad. Because this ad never even mentions the drug.

Instead the campaign aims to raise awareness of Dry Eye by telling us to love our eyes, see our doctors, and talk to them about our symptoms.

We couldn’t agree more.

It’s incredibly important, if you’re suffering with Dry Eye symptoms, to see your doctor, because it’s literally impossible to diagnose your own specific Dry Eye condition. For one, you can’t see everything that’s going on unless you’re looking through a slit lamp. And you can’t always tell what’s going on just by what you feel. So for an accurate and comprehensive diagnosis, you need to see a really good eye doctor.

Visit the website that Jennifer Aniston talks about and you’ll learn that the campaign is sponsored by Shire, maker of Xiidra™ (lifitegrast ophthalmic solution 5%). Shire announced on August 29, 2016 that the drug cleared FDA approval and would be available by prescription in the US.

Revolutionary new miracle drug for Dry Eye?

And what exactly is Xiidra? Is it the revolutionary new miracle drug for Dry Eye that so many of us hope for?

Xiidra is a non-steroidal, anti-inflammatory “prescription eye drop used to treat the signs and symptoms of dry eye disease.”

According to Shire, “the most common side effects of Xiidra include eye irritation, discomfort or blurred vision when the drops are applied to the eyes, and an unusual taste sensation (dysgeusia).” Side effects were reported at least 5 – 25% of the time.

Although Xiidra is not the same product as Restasis, we noticed some similarities, namely:

• They’re not sure how or why it works: “the exact mechanism of action of lifitegrast in dry eye disease is not known.”
• You may have to use it for a while before you see any benefit.
• It may cost a lot, depending on your insurance.

The product information sheet describes the clinical trial like this:

Enrollment criteria included, minimal signs (i.e., Corneal Fluorescein Staining (CFS) and non anesthetized Schirmer Tear Test (STT)) and symptoms (i.e., Eye Dryness Score (EDS) and Ocular Discomfort Score (ODS)) severity scores at baseline.

Note that “minimal signs” was an enrollment criteria, so there’s no indication from the study how the drops will work on someone with moderate or severe symptoms. And only non-anesthetized Schirmer tests were used. This test is usually used to screen for aqueous deficiency associated with Sjogren’s Syndrome (no tear production despite irritation) versus Schirmer with anesthetic, which tests for non-Sjogren’s aqueous deficiency. It’s not clear to us why they went with no anesthetic.

There are no results from a long-term or multi-year study. And since the drug was just released, there’s no post-marketing information — results from a large and diverse patient population.

The Xiidra product information sheet includes charts that show how well patients responded to the drug in the clinical trial. It takes a bit of detective work to tease out the information in the charts. (We would have preferred more details in the numbers, e.g.: how many benefited and how much, rather than one  single number adding them all up). In any case, here’s what we found:

• Eye dryness scores usually improved a little more with Xiidra than with the placebo.
• Corneal staining scores usually improved a little more with Xiidra than with the placebo.

Only a little better than the placebo. Oh well. At least for some maybe there will be some improvement in symptoms.

Bottom line – Xiidra may help some people with mild symptoms somewhat, with a decent chance of having some side effect. But it’s probably not the revolutionary new miracle drug for Dry Eye that patients hope for. That’s because most of us are still facing a multi-factorial, chronic disease, that requires diligent and persistent care under the supervision of a qualified and experienced eye doctor.

So take Jennifer Aniston’s advice if you have Dry Eye symptoms. Love your eyes and see your eye doctor.

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Send your questions and comments to blogger@notadryeye.org.

Subscribe to our blog to keep up with Not A Dry Eye.

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