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Dr. John A. McAree, a board certified physician of Internal Medicine, first became aware of having eye problems at the age of 18 when he tried wearing contact lenses. He never found them comfortable and could tolerate them only for short periods of time. About 10 years later during his residency program, an astute ophthalmologist offered to administer a few tests. Dr. McAree’s Schirmer’s test result was zero in both eyes but his tear break-up time was normal. The diagnosis was Dry Eye Syndrome. He had no additional Dry Eye tests for the next 25+ years, and the only therapy suggested was giving up his contact lenses. Remarkably, his eyes remained fairly asymptomatic during that entire time.

That all changed on August 21, 2017 when Dr. McAree and some friends were boating on a small inland lake in Michigan. It was the day of the solar eclipse. Although he did not look directly at the sun, its rays reflected off the water directly into Dr. McAree’s eyes. By the next morning, his eyes were extremely painful. He assumed that he had developed solar keratitis (similar to “snow blindness”) and would recover quickly. Still in pain a week later, he sought the care of an ophthalmologist who said that except for dryness there was nothing wrong with his eyes, prescribed a one-week course of a non-steroidal anti-inflammatory drop, and suggested using a lubricating drop. Unfortunately, nothing helped.

Seeking Help

Dr. McAree then begged the ophthalmologist for punctal plugs and a RESTASIS prescription. When these treatments didn’t help, the ophthalmologist offered to partially sew his eyes up, at which point Dr. McAree decided to find a different ophthalmologist.

The new ophthalmologist put Dr. McAree on a regimen of steroid drops and resumed RESTASIS. These measures helped a little bit but his eyes remained uncomfortable and his vision blurry. Thankfully, at least the new ophthalmologist was positive and encouraging. Having hope meant a lot.

After several months and no significant improvement in symptoms, Dr. McAree consulted a Dry Eye specialist at a local university who offered little else besides serum tears. One month later there was still no improvement. It was time to takes things into his own hands.

Comprehensive Diagnosis

With some understanding of the pathophysiology of his disease, Dr. McAree diagnosed himself with Meibomian gland dysfunction (MGD). After reading reviews and about available treatments, he decided his best option would be Dr. Steven Maskin in Tampa, Florida who had developed intraductal probing of the Meibomian glands and is very well published.

Dr. Maskin thoroughly evaluated Dr. McAree and diagnosed:

• non-Sjogren’s aqueous tear deficiency
• MGD
• conjunctivochalasis,
• delayed tear clearance
• demodex mites
• possible allergies contributing to the tear deficiency

Dr. McAree first had Meibomian gland probing in August of 2018 which provided subtle but important improvements in symptoms, the most important being increased tear film stability and therefore less visual blurring.

Because of continued foreign body sensations due to conjunctivochalasis, in early 2019 Dr. McAree had amniotic membrane transplant surgery in both eyes. With surgery the comfort in both eyes improved considerably. A second Meibomian Gland probing in June of 2019 improved comfort even more.

Hope Restored

Today Dr. McAree accepts that his eyes are not yet “normal” and will require ongoing treatment. However, he is grateful that an extremely painful and disabling condition is now much more manageable. Work requires time at a computer screen and can cause some discomfort, but he is again able to enjoy hobbies like bird watching and kayaking.

These days Dr. McAree uses RESTASIS daily, scrubs his eyelashes with tea tree oil to control demodex mites, rinses his eyes with saline to eliminate allergens, and still uses lubricating drops, but only occasionally. Plus, he is having injections to combat allergies. He is very hopeful that he will continue to experience improvement in his symptoms, and encourages anyone with debilitating Dry Eye symptoms not to give up hope.

Dr. McAree received his medical degree from Duke University School of Medicine in Durham, North Carolina and has practiced medicine for many years in Grand Haven, Michigan. He joined the Not A Dry Eye Foundation Board to emphasize the importance of accurate diagnosis of Dry Eye, MGD, and related comorbidities, and their treatment with targeted, effective therapies.

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My name is Sue VandePanne, and it’s been nearly three years since I shared my story of hope. I suffered with Dry Eye, but with the right care, I overcame my struggles. I’m writing again today to say to those of you still struggling, don’t give up hope.

Over the last three years my eyes have continued to improve. It has been a slow process but today they feel better than ever. In fact, a few months ago it suddenly occurred to me that I had been going outside on windy days. A few short years ago I never would have even imagined it possible. Surprisingly, even in all that cold, Michigan, winter wind, my eyes were feeling just fine. I felt triumphant. Dry Eye was no longer running the show.

Watching Out for Fans

Even though the wind outdoors hasn’t been a problem, I’ve learned that my eyes feel better when I avoid overhead fans. For some reason air that blows from above is harder on my eyes. So now I have a mental map of all the overhead fans in my favorite restaurants and I choose very carefully exactly where I sit. Another problem solved!

I still wear wet contact lenses because enough oil from my Meibomian glands doesn’t reach my tear film, so my own tear film evaporates quickly. The wet contacts feel great. They’ve become so much a part of my daily routine that I don’t even think about them unless it’s time to order more. To maximize the amount of oil I do produce and secrete, I have my Meibomian glands probed once a year. This opens a channel for the oil to flow out and is something my doctor in Tampa, Florida will be doing once a year for the foreseeable future.

Miraculously, A Fully Functioning Individual

Miraculously, I’m now a fully functioning individual (who will never take her eyes for granted anymore). Sometimes I hear horrific stories from people who are suffering terribly and feel hopeless — a feeling that I remember well. Life with Dry Eye can seam hopeless, but I’m writing this to assure you that it doesn’t need to. Help is available. I was blessed to find a great ophthalmologist, Dr. Steven Maskin, who truly understands Dry Eye and knows how to treat it. You will find a great doctor too.

My best to all of you… there is HOPE!

Sue VandePanne, Dry Eye Patient

Read Sue’s other blog posts:

Sue VandePanne’s Story of Hope

Sue VandePanne Answers Readers Questions

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

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A few weeks ago I attended a social luncheon and noticed a friend had a stye on the upper left corner of her right eye. Her stye probably went unnoticed by everyone there.

But ever since my own years-long battles with Meibomian gland dysfunction and chronic Dry Eye I’ve become hyper-aware of the eyes around me. So, now I notice red eyes, inflamed eyelids, what might be anterior blepharitis, scaly skin around the eyes, dandruff in eyebrows, and yes, styes.

A few days after the luncheon I woke up with a small bump smack inside the middle of my left lower eyelid. I tried not to panic. Was it a stye, I wondered?

Breathe and Think!

“Breathe and think,” I reminded myself. I had to think!

Did I do anything out of the ordinary, like touch my eyes without washing my hands first?

Well…maybe.

Did something blow into my eyes?

A good possibility.

Should I call my ophthalmologist?

It’s Saturday morning. Oh no!

And with that thought my mind panicked and bounced even faster from thought to thought.

Maybe I should e-mail him. Is this stye a setback? Will it require another intraductal probing of the Meibomian glands in that lid? Maybe the gland is atrophied…

Stop It!

“Stop it,” I commanded myself. “Breathe and think!”

So I stopped, took a breath, and called a friend who happens to be a very experienced Dry Eye patient. Then I did some research on styes. This is what I learned.

A Stye in My Eye

First, a stye — sometimes spelled sty — is an infection localized to the eyelids, in glands at the base of the eyelashes or in the Meibomian glands. The infected gland swells and causes a bump. Styes can be painful, red, and tender. They’re usually caused by an overgrowth of staphylococcal bacteria and are contagious, so it’s best not to share towels or pillows with someone who has one.

How are they treated? Keeping eyelids clean is super important. First wash your hands then wash the lids with a mild cleanser. Applying warm compresses helps a lot. With those impeccably clean hands, roll up a clean wash cloth and run warm to hot water over a corner of it. Without applying pressure, hold the warm, wet corner of the wash cloth against the stye for at least five minutes. Some doctors recommend applying warm compresses from 10 to 15 minutes, three to four times a day.

Whatever you do, don’t pop a stye. Plus, avoid eye makeup for a while, at least until the stye goes away, and throw away any makeup that might be contaminated. Over-the-counter pain medications won’t speed up healing, but they might reduce the pain. And if the stye doesn’t heal within a few days, it’s best to see an eye doctor.

Breathing Again

Ok, I was breathing again. No full-blown panic attack this time. All it took was a reminder to breath, a call to a good friend, some research, and a bit of common sense.

But in a week, if that stye isn’t gone, guess where I’ll be.

Susan Howell, Dry Eye Patient

Read Other Blogs by Susan Howell

Susan Howell’s Story of Hope

There’s Something in My Eye

Managing Dry Eye Today and Every Day

4 Steps for a Better Life with Dry Eye

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

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In Part 4 of Reading Between the Drops we look at the journals that publish research papers. And we discuss studies that look at metadata.

Journals

Scholarly journals publish research papers. Sometimes the journals are peer-reviewed. Peer-reviewed means the paper was judged and approved by a jury of experts before publication. The review process gives credibility to the paper.

It’s not always obvious which journals are, and which journals aren’t, peer-reviewed. You can check the journal’s masthead, the section with the names of the editors. But you might have to dig deeper to find out for sure. Usually peer-reviewed journals display their status prominently. So if you’re searching, and not finding any evidence of peer-reviewing, it’s probably not peer-reviewed.

(If you have access to it, Ulrich’s (ulrichsweb.serialsolutions.com) let’s you check if a journal is peer-reviewed).

No Standard Peer-Review Process

Even so, not all peer-reviewed journals are created equal. That’s because there’s no standard process all journals follow to ensure the quality of their reviews. So one journal might have a rigorous peer-review process. But another one’s might be more lax.

How so?

It might start with something as simple as independence.

Independence means different people perform different roles. Authors, for example, can’t be editors or reviewers.

But not all journals require independence. That means you could be the author and the reviewer of your own paper.

Can you imagine what could happen if you were judging your own paper. Would you challenge your hypothesis? Would you challenge your methodology or your conclusions?

In two words: probably not.

Or more accurately, definitely not.

As a result, you’d be able to publish whatever you want. There’d be no one to challenge your assumptions or the design of your study. No one would question your conclusions, or anything else about what you’re saying.

Reading Between the Drops – 7 Questions to Ask

1. Does the hypothesis make sense?
2. How the research was conducted, does that make sense?
3. Does the conclusion make sense
4. Who are the authors?
5. Did the authors make any financial disclosures?
6. Is the journal peer-reviewed?
7. Is the journal independently peer-reviewed?

And sometimes a lack of independence means important studies don’t get published. This sometimes happens when editorial boards have their own agendas. If a study comes along that challenges these agendas, the study might end up collecting dust. Lots of it.

To be sure, sometimes a lack of independence happens for a very good reason or it’s unavoidable. There just might not be enough experts in the field to go around, for example. Something like that might happen if it’s a new field or if there are only handful of experts. Even so, it could indicate a problem.

Analyzing Metadata

Metadata. Studies about data in other studies. Metadata studies look at all of the available data on a particular topic. They aggregate, filter, and make sense of the data. Simple enough, unless it’s not.

Because, as noted above, there’s always the potential for bias. Editors might block some papers or make publishing all but impossible. Unfortunately, it happens all the time.

So by definition, a meta analysis can only consider published, not suppressed, data.

And that means just one previously suppressed study could throw a metadata study out the window.

Wow! That could change things… a lot!

Just think about it.

And with that thought, we conclude our 4-part series on Dry Eye studies.

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

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In Part 3 of Reading Between the Drops, our series on Understanding Dry Eye Research, we look at the people who conduct studies and publish papers. We’ll ask first, who are the authors? And then, who paid for the study?

Who Are the Authors?

When you look at the authors of a study, sometimes you’ll see their first and middle initials, sometimes their full names, or sometimes their credentials, like PhD or MD. What’s displayed is based on the convention used by the journal that published the study.

But did you know the order of the names might also be important?

Traditionally, at least in bio-sciences, the first position is reserved for the individual who originated the idea for the study and is its primary author. The last person listed is sometimes reserved for an honorary authorship, or someone who oversaw the study. In between are individuals who contributed to it in some way, usually in diminishing order. So, the further down the list, the less they contributed.

The ordering of names in this way is just a rule of thumb and in fields other than bio-science other conventions are used. But sometimes life doesn’t make it so easy to assign a first and last position.

Sometimes two or more people share equal responsibility for an idea. And maybe there’s more than one person in charge. Anything else might happen too, like the departure of a primary author. Where does her name go then? Or what if two people contributed equally but one person thinks they contributed more?

Any Affiliations?

So position might be important.

But it’s also important to ask who are the authors affiliated with? Is it a reputable organization? Where did they study?  Where are they working? For a drug company, for example? Which drug company?

And once you know their names and affiliations, go ahead and google their names. You might find a detailed bio, areas of research, or other info that might give you a little more insight into who they are.

Here’s another very important question to ask.

Who Paid for the Study?

That’s right. Who paid for it? And what, if any, financial disclosures did the authors make?

By now many of us are acutely aware that the sugar industry funded studies on fat and health. Is it any surprise that those studies reported that fat was the enemy?

As of 1999 the FDA has required that clinical investigators disclose any financial relationships they may have. That’s to ensure that any data submitted isn’t affected by money.

But not all studies are submitted to the FDA. So where can you find the financial disclosures?

Sometimes financial disclosures are included in the author information section, and they’re easily found in the summary of a paper.

But not always.

Sometimes the financial disclosures will all be in a section called, of all things, Financial Disclosures. But this section isn’t always released with a summary, so you might have to dig deeper.

If you can access the full publication (sometimes they’re free), you should be able to find the financial disclosures somewhere. They might even be in a footnote.

We’re not saying that just because a researcher has a financial relationship of some sort with some entity the research is bad, or wrong, or misleading. We’re just saying, financial disclosures are something to be aware of.

Who funded a study, for example, is one of those somethings.

Because, as it turns out, awareness is everything when it comes to Dry Eye.

Next time we’ll talk about where studies are published, because, as that turns out, not all journals are created equal. Surprised?

So remember, whenever you read a research study, ask yourself these questions. Next time, we’ll add a few more questions to the list.

Reading Between the  Drops – 5 of 7 Questions to Ask

1. 1. Does the hypothesis make sense?
   2. How the research was conducted, does that make sense?
   3. Does the conclusion make sense
   4. Who are the authors?
   5. Did the authors make any financial disclosures?

Reference

50 Years Ago, Sugar Industry Quietly Paid Scientists To Point Blame At Fat
Camila Domonske
NPR
September 13, 2016, 9:59 AM ET
View the Full Report

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Becoming better consumers of medical research is something all patients can try to do. Last time we suggested asking these two questions when you read a study.

1. Does the hypothesis make sense?

2. Does the experiment make sense?

Here’s another question you can ask yourself. It might help you read between the drops and become an even better consumer of medical research.

3. Does the conclusion make sense?

Let’s say you’re reading a study about a new treatment. Pretty soon you skip to the conclusion because there are so many medical and statistical terms that your head is spinning. And because you have Dry Eye, your eyes hurt too.

So what do you find in the conclusion? The researchers probably say the product they studied is an effective treatment for the disease.

Should you be concerned or surprised?

No. Not if patients who participated in the study really improved.

But how do you know the researchers aren’t making outsized claims? How can you tell they’re not overstating the facts? How can you tell if patients really improved?

One way to verify what the researchers conclude is to check their numbers. You’ll find the numbers in the Results section of the summary.

Yes, most of the time the numbers will be extremely confusing. You’ll be tempted to skip over them. It’s statistics after all. And since most of us haven’t studied statistics we’re not going to get into a long lesson in statistical analysis.

But we will say this. The numbers have to add up.

Here’s what we mean.

1 + 1 = 2, Always

If the results indicate that 90% of patients improved, great. 90% is practically 100%, and that’s a lot of people who feel better.

But what if the math looks like this.

Of 100% of people studied:

15% of people improved with treatment
5% of people improved without treatment

What about the other 80 – 85%, because

100% – 15% = 85% – 5% = 80%

Here’s a real-world example of a study with math exactly like that.

…in approximately 1,200 patients with moderate to severe …Dry Eye…This effect was seen in approximately 15% of treated patients versus approximately 5% of vehicle-treated patients.

(Vehicle just means a drop without the product being tested added).

So it’s the exact same math. Math is math. 1 + 1 = 2.  That never changes.

You get the exact same equation:

100% – 15% = 85% – 5% = 80%

What About the Other 80%?

But now, ask yourself, what about the other 80% that didn’t improve? What about them? After all, 80% is a lot of patients who don’t feel better, especially if the researchers conclude that xyz is an effective treatment. 

And what if the 80% are prescribed a treatment that only helps the 15%?

That’s a lot of unnecessary prescriptions, a lot of wasted money (if you’re a patient – not if you’re the drug company), and something serious to think about.

Find out which Dry Eye treatment was the subject of this study.

So if you see a study, and it’s about a product your doctor recommends, don’t be afraid to ask, “Am I going to be in the % that improves, or in the % that doesn’t benefit from the treatment at all?”

Then together, you and your doctor can decide if this treatment makes sense for you to try. Are you a candidate or not? Will it help you, or not? And if yes, how much?

Next time we’ll look into financial disclosures, where studies are published, and what it all means. And we promise, there won’t be any math…maybe.

Registration for Dry Eye Retreat 2018 is now available on Eventbrite.

REGISTER NOW

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

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There are no shortages of easy-to-find, over-the-counter Dry Eye treatments. Just go to your local pharmacy and check out the staggering variety of lubricating drops they offer. But are those drops really what you need?

There are no shortages of doctors who treat Dry Eye either. Ophthalmologists, optometrists, even primary care physicians. It’s easy enough to find one and get some sort of diagnosis. They’ll typically prescribe one of the standard treatments. You already know what those are. Lubricating drops, warm compresses, anti-inflammatory drops, lid wipes. These will help a lot of patients. But not everyone will find relief.

Finding a doctor with more that just the typical tools in his medicine bag is a bit harder. In many parts of the world, including the US, those doctors just don’t exist. Patients sometimes end up travelling hundreds – or even thousands – of miles for the care they need.

Sometimes the treatments work. Sometimes they don’t. Why not?

Because treatment is the last thing Dry Eye patients need. Yes, the last. And that should come as no surprise.

Crack Team of Doctors

Have you ever watched the medical drama House? According to IMDb, House is “an antisocial maverick doctor who specializes in diagnostic medicine [and] does whatever it takes to solve puzzling cases that come his way using his crack team of doctors and his wits.”

In just about every episode, a patient shows up at the hospital with strange symptoms. Dr. House and his team examine the patient. They listen to the patient’s story, run a bunch of tests, and pronounce a diagnosis. Then they prescribe something. The first treatment usually doesn’t work. They realize they’ve misdiagnosed the patient. It’s a medical mystery.

The team reconvenes, ponders, discusses, and gets yelled at by Dr. House. What is this a sign of? What is that a sign of? Could it be this? Could it be that? Let’s run some more tests. After a few more nail-biting tries, Dr. House finally has an aha moment. He figures out what all of those strange symptoms mean and pronounces a different diagnosis. Then, finally, the patient gets the right treatment and begins to improve. We, the audience, breathe a collective sigh of relief and the episode ends.

The First Thing Every Dry Eye Patient Needs

So what’s the first thing Dry Eye patients need?

The answer is, a diagnosis.

But not just any kind of diagnosis. What Dry Eye patients really need first is a thorough, comprehensive, and accurate diagnosis that accounts for every symptom.

Every burn, every pain, every discomfort. All of them.

Then, after the doctor has a complete understanding of a patient’s symptoms and what’s causing all of them, treatment –  that’s effective –  can start. Dr. House would probably agree.

This process, incidentally, is what should happen during every first appointment or follow-up visit thereafter. What’s going on? What do you feel? What does it mean?

It’s a pretty well accepted process, followed by most good practitioners and expert diagnosticians, just like Dr. House.

Treatment is the Last Thing Dry Eye Patients Need

They start with a diagnosis. Then they refine that diagnosis as things progress.

It’s no different with Dry Eye doctors. The really good ones start with a comprehensive diagnosis. They may already have some idea about what’s going on based just on your symptoms. But the tests they administer give a more comprehensive picture, which leads to an even more precise diagnosis.

Then finally, after that all-important accurate diagnosis, effective treatment – the last thing Dry Eye patients need – can start.

To everyone who tried to register for the Dry Eye Retreat, we apologize for any inconvenience.

The event has been cancelled. 

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

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This post is for anyone suffering with bouts of Dry Eye that just never seem to go away.

Yep, there are a lot of us. Way too many in fact.

It’s also for anyone with Dry Eye who’s ever heard, “but your eyes look fine.” (So annoying).

And it’s for anyone whose doctor prescribed another standard treatment while saying, “you’ll learn to live with it”. (Thanks for… not much).

If you had a good eye-day one day. But the next morning you woke knowing it was going to be a bad eye-day, this post is for you too. (Doesn’t everybody measure their days by how good their eyes feel?)

If you’ve seen lots of doctors — too many to count — for Dry Eye symptoms that don’t go away, this post is for you.

If You Have Dry Eye, This Post is for You

Anyone with Dry Eye who’s tried HRT or a different diet, all because you’re seeking relief from Dry Eye, we’ve thought about you.

If you have autoimmune or other diseases that cause Dry Eye, or take medicines that help another condition but cause Dry Eye, this post is for you too. (Sometimes it seems like you can’t win).

You might have strange Dry Eye symptoms. Your doctors don’t talk about them and you never hear about them (except maybe on this website). This post is definitely for you.

Do you think you’ve run out of treatment options? This post is most definitely for you.

If you’re starting to feel desperate, we were thinking specifically of you.

If you’ve had suicidal thoughts, (or if you’re having them now, please immediately contact your local or national suicide prevention hotline), this post is especially for you, more than anyone else.

And even if you’ve found one of those rare doctors who actually understands what’s going on with your eyes, you’ve found relief, and you’re getting your life back, this post is for you too.

Because there are just two things that Dry Eye patients need to understand and embrace whole-heartedly.

First, you are not alone.

There are lots of us out there with some version of Dry Eye. It’s usually a condition that’s a lot more complex than just dry eyes. But still, it’s Dry Eye.

And second, there’s always hope.

Whatever you do, hang on to hope. You’ll have to persevere. You’ll have to find that rare, great doctor who can really help you. But you will.

And when you do, you’ll get better. You’ll get you’re life back.

Hope!

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

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