Irritated by the lack of awareness

[DesertWind]

I developed Dry Eye Syndrome/Disease whatever you want to call it last Summer, it was a life changing event. I've had to alter the direction of my career, from working as a digital artist in the games industry... to doing manual labor and seeing everything as a Sisyphean struggle. I've only been to an optometrist so far (who was clueless), and a general practitioner, so I don't know what type of dry eye I have... I'm assuming it is evaporative. I can't afford to see an optamologist yet but I hope to have better insurance within a year.

Anyway to my point, I can't stand how little knowledge there is about this. I tell people about it and they say "Oh I have dry eyes too!" and they proceed to tell me about some mild irritation, not the chronic painful condition people like me have to wake up to daily and change their diet, stop drinking coffee, not use computers etc.

Doesn't that annoy you? Then I try to google it and results come up written by some nitwit saying how many millions of American have it, and you can basically take care of it with eye drops and a warm eye compress. Well gee, I'm all set then.

I wish there was another name to set it apart, something not so generic like "dry eye syndrome". So people would understand that it is a chronic condition that they should hope they never get, to take care of their eyes and not spend all day in front of computers drinking coffee like I did. It often feels like I'm going through this struggle alone, aside from the online community, even family members make me feel like I'm being a drama queen. Do you experience the same, do you think awareness will grow?

[diydry]

Amen. People are clueless, which I suppose is to be expected. But what is really frustrating to me is how clueless many ophthalmologists are, who think this is not a big deal because it is not life-threatening or sight-threatening. That goes double for refractive surgeons...

When I speak to friends about the condition, I try to avoid referring to it as "dry eyes." If I do, I don't get much sympathy since folks think it's just mildly annoying. Instead I tell them I was diagnosed with a chronic condition which causes dry and painful eyes, and/or I tell them I have a chronic infection and inflammation of the eye (referring to my meibomian gland dysfunction). Then people start to pay more attention and want to learn more about the disease, which I think is a better place to approach others in raising awareness about this condition.

I also think it's interesting that there is increasing awareness about other chronic diseases, such as inflammatory bowel syndrome, colitis, diabetes, etc. This is good news. Hopefully dry eye disease will start to get more attention. Maybe we need to start a "Walk for a Cure" fundraising campaign to support dry eye awareness and research (and we can all wear our outdoor dry eye glasses).

[MGD1701]

Indeed it is very frustrating how little knowledge is - even among doctors.
It is growing yet slow.

What sad is, more influential doctors are aware of this,
still NOTHING positive can be done -
except just URGE their peers to proactively screen 'each patients' etc.
Something wrong with the system! Who can benefit from this exactly??

Progression is preventable and much easier/cheaper to treat at earlier stage but only possible if drs do their job properly.
Is a win-win for the doctors, insurance companies, the society and patients if doctors detect each patients on the 1st visit? a small effort but makes a huge difference - costs no extra investment & very simple to achieve for doctors.

Patient would consider doctors who save their glands/life as their hero too!
--------------------------------------------

Hi DesertWind

suggest you do the following as soo as possible to stop prevention & decide how aggressive treament should be employed.
1) take gland images
2) examine gland function, if clear oil comes out etc.
3) if you have inflammation, need to keep it under control as soon as possible

I suspect you have MGD given your pc related job.
Blinking exercise, warm compress, lid hygiene and omega 3 + GLA help and are important - these are basic treatment from USA.

Almost all opinion leaders/doctors in USA (I know of) now recommend 'aggressive treatment' to stop progression.

We can only keep learning/exploring new things - only knowledge helps, my experience tells me. ell, we have to be proactive!!
Good luck!

[WellEyes]

I completely share your frustration. There needs to be more awareness and more research to come up with more effective treatments and hopefully a cure!!! I feel that there is little being done mainly because people just don't understand how this horrible disease can mess up our lives in every possible way.

I cannot grasp how it can be so difficult to get to the root cause of the illness. By this, I don't mean telling me I have water deficiency or evaporative dry eyes or both.. I mean why do I have MGD, what is going on in my eyes so wrong that I cannot fix it? Just to give an example, I have used antidepressants for long years, plus I worked on the computer for long years, etc and now I do not do those things anymore. Why can't I reverse this? There must be a way.

It is very frustrating not to be able to get gradually better. If one day gives hope, next day can be a disaster. Whether it is a bad night's sleep, a half pack of chips which I allowed myself thinking I am gonna be fine, a glass of wine... or better yet, none of these! Something but I do not know what. Not to be able to plan your life, not even if you can accept your friend's invitation to have some tea outside. Because it's tomorrow right? And we have no clue what tomorrow will be like. This is killing me and all my perspective in life. Not having a life is one thing, not having any hope for gradual progress or perspective for future is another.

[DesertWind]

Hi DesertWind

suggest you do the following as soo as possible to stop prevention & decide how aggressive treament should be employed.
1) take gland images
2) examine gland function, if clear oil comes out etc.
3) if you have inflammation, need to keep it under control as soon as possible

I suspect you have MGD given your pc related job.
Blinking exercise, warm compress, lid hygiene and omega 3 + GLA help and are important
- these are basic treatment from USA.

Thanks, it is very worrying to me to go professionally undiagnosed, but I am doing all of those things. I take fish oil + Hydro Eye morning/night, trying to get off wheat (inflammation), sanitize eyelids every now and then, periodically do the eye compresses (though I should probably do them more often). I'm not sure if this would be considered aggressive treatment.

I cannot grasp how it can be so difficult to get to the root cause of the illness. By this, I don't mean telling me I have water deficiency or evaporative dry eyes or both.. I mean why do I have MGD, what is going on in my eyes so wrong that I cannot fix it? Just to give an example, I have used antidepressants for long years, plus I worked on the computer for long years, etc and now I do not do those things anymore. Why can't I reverse this? There must be a way.

I find it hard to grasp too, the root cause seems like the question everyone should be asking: why don't my eyelids want to do their job? If you have clogged pipes you unclog them and things flow, but if they are repeatedly clogging, what is going on here?

It feels like the answer should be so simple, it creates this constant feeling of disillusionment like being in a bad dream you're expecting to wake up from. Everything I want to do involves using my eyes.

[Guest]

My opinion is this, if you aren't living through it, you can't truly appreciate how devastating it is. As someone just mentioned, it's not life or sight threatening. Also, not much money to be made from it. Finally, we take up a lot of chair time, are difficult to treat and if they tried to prevent any problems, they reduce future earning.

Lets talk reality, in reality an opthamologist should tell a patient wanting contact, I don't think this is a good idea because we know long term, contacts efffect the tear film. Because most likely that person will leave and buy them online or elsewhere. The doctor doesnt say, lasik could cause some issues, so avoid it if possible. They do the procedure, have you sign the consent form and then sell you more crap after the surgery to fix the complication.

Make no mistake, this is a business...this is how people feed their families. So they're gonna take the 2k for the lasik or sell you the contacts or what not, because they need cash flow in their business. We're like cattle, we come in, we pay and then we leave. You're lucky to leave the same way you came in. It's sick but people need to understand that no one cares about you more than you.

An abrasion caused my dry eye...but I've had MGD for years and no one caught it. So when I had the abrasion, my blink rate and complete blinking stoped for 3 months due to pain/inflammation then my MGD tipped into horrible. Had someone expresssed my glands and got me on a compress early this wouldn't have happened and if it did, wouldn't have been nearly as severe. But again, why do that when I can make more money treating your chronic condition?

I hope more more people become aware. I have a 6 month old and all this happened a month before she was born. I will make sure I teach her lid hygiene, proper computer use and blinking. She has my blood type, my eyes, and I'm assuming my problems. I'm gonna start with her. Much love! Sorry you're all suffering.

[diydry]

Lets talk reality, in reality an opthamologist should tell a patient wanting contact, I don't think this is a good idea because we know long term, contacts efffect the tear film. Because most likely that person will leave and buy them online or elsewhere. The doctor doesnt say, lasik could cause some issues, so avoid it if possible. They do the procedure, have you sign the consent form and then sell you more crap after the surgery to fix the complication.

Make no mistake, this is a business...this is how people feed their families. So they're gonna take the 2k for the lasik or sell you the contacts or what not, because they need cash flow in their business. We're like cattle, we come in, we pay and then we leave. You're lucky to leave the same way you came in. It's sick but people need to understand that no one cares about you more than you.

An abrasion caused my dry eye...but I've had MGD for years and no one caught it. So when I had the abrasion, my blink rate and complete blinking stoped for 3 months due to pain/inflammation then my MGD tipped into horrible. Had someone expresssed my glands and got me on a compress early this wouldn't have happened and if it did, wouldn't have been nearly as severe. But again, why do that when I can make more money treating your chronic condition?

Well said, and I'm sorry to hear about your abrasion. I think some doctors are malicious, as you suggest, in that they just want to make money and they feel that patients will take their business elsewhere if they don't provide the service. Refractive surgeons are most guilty here, I suspect. While there will always be bad apples in every profession, the bigger issue to me is the overall mindset in the health system that ignores prevention and focuses primarily on treatment, especially via prescription meds. Doctors know a lot about acute and emergency problems, they know very little about chronic diseases. So it's really frustrating to think how totally preventable my situation is, it simply would not have happened if healthcare providers had warned me better about my (decades of) contact use and computer use and had screened better for MGD and dry eye before LASIK. This, IMO, is a failure of the healthcare system which reflects poorly on the training physicians receive, as well as the reliance on prescription drugs/procedures to treat patients and and by extension, influence of the pharmaceutical industry in the healthcare system. *end rant*

[MGD1701]

Hi DesertWind

Coffee:
Per Dr Paul M. Karpecki, who lectures a lot to doctors, mentioned in one of his videos that
coffee is actually good for dry eye - of course not too much.
I have no problem with it with 2 cups/day with milk but no more sugar - which seems to be better for my eyes.

[Guest]

Well said, and I'm sorry to hear about your abrasion. I think some doctors are malicious, as you suggest, in that they just want to make money and they feel that patients will take their business elsewhere if they don't provide the service. Refractive surgeons are most guilty here, I suspect. While there will always be bad apples in every profession, the bigger issue to me is the overall mindset in the health system that ignores prevention and focuses primarily on treatment, especially via prescription meds. Doctors know a lot about acute and emergency problems, they know very little about chronic diseases. So it's really frustrating to think how totally preventable my situation is, it simply would not have happened if healthcare providers had warned me better about my (decades of) contact use and computer use and had screened better for MGD and dry eye before LASIK. This, IMO, is a failure of the healthcare system which reflects poorly on the training physicians receive, as well as the reliance on prescription drugs/procedures to treat patients and and by extension, influence of the pharmaceutical industry in the healthcare system. *end rant*

I don't want to give the impression I think Drs are malicious, rather I think they're indifferent. That coupled with the fact that this is a job/career/Maloney making endeavor, makes them appear negligent. I don't think they intentionally hurt people, but I do think they will take your cash without being 100% honest with you about procedures or medicine. If they were, they probably wouldn't make money.

I owned a business for 20 years and just sold it two years ago. The products we sold didn't require a sales pitch, catalyst products for cars, generators, etc. I never had to lie or bend the truth to make a sale. However in some instances, you need to sell sell sell no matter what or you end up broke. So take lasik for example, if you are honest about the procedure, there are more complications that arise than what is suggested on the consent form. So say you tell all your patients about the real risks, how many do you think will pull the plug on the laser correction? Some percentage will...that hurts your pocket. So I think they take the approach, your a big boy/girl...you want me to shoot a laser into your eyes that's on you. now that's true right? We make our own decisions in life and must live with them...but how fair is that to someone who doesn't understand the true danger of the procedure? If the goal is to keep people healthy we need to make them aware of all possible outcomes.

As for preventative medicine, it doesn't exist because doctors are only taught to treat visible signs of disease. This is another issue with dry eye. Take me for example, I look so normal with my eyes, not bloodshot, mild blepharitis, but I'm always having an issue with my eyes, burning, dryness, shooting pain...but I go to the doctor he says, no staining and the oils just a tad off, no big deal. No big deal to him, but I'm in pain man. So there's two issues here...no one saw my MGD prior to the abrasion (preventative) and my current signs do not align with my symptoms. So what can he do for me? Throw drugs at it pretty much (now it's too late). Being sick isn't what a doctor wants...but if you're healthy he isn't making money. So again, not malicious per say, but maybe just negligent or even incapable of offering proper treatment.

Another question, how many doctors do you think study the current news on dry eyes? I believe the people in this forum have more to offer than most doctors because they're living it, trying new things, WE are the ones on the cutting edge aside from a few drug companies and researchers. They just don't have time to put into it unless it's their passion or they also have an ocular disease. My current doctor has dry eyes bad, so he gets it. Answer all my questions, makes my serum drops in house, cares about what I have to say and even he is limited on what he can do. He said to me, man, if you were in medical school right now you'd be the guy asking all the right questions. He felt I was as knowledgeable as he was to an extent, he literally said, you may know more about this than I do. That's scary!

[MGD1701]

Even top U.S. doctors, to be exact Dr/Professor Neda Shamie, and others mentioned that they did not learn dry eye at school so they need to learn.

One doctor said I am an expert - mainly my good/basic questions.
In some instances I know more (new things) than them.
Well, I can't get much help, have paid huge price (not able to work etc) & wasted too much money/time (LipiFlow, for example) to stop pregression. Dont trust them that much anymore. To educate myself and try new things are more reliable. My eyes have now been fit (to work again)

Only one was honest telling me, ''sorry, can not help you'', on the 2nd visit - wasted 6 months. Lid hygiene is so important/basic but only 2 drs told me. Almost none recommended omega 3. Most doctors are just lack of passion/knowledge or no time to learn?

Good news is there are still many doctors in USA with great passsion to share their expertise and I am very grateful for their generosity.

Lastly, dry eye is NEW and there are many new stuff.
If doctors are not catching up, we have to be proactive!

[DesertWind]

Hi DesertWind

Coffee:
Per Dr Paul M. Karpecki, who lectures a lot to doctors, mentioned in one of his videos that
coffee is actually good for dry eye - of course not too much.
I have no problem with it with 2 cups/day with milk but no more sugar - which seems to be better for my eyes.

Well I was a fiend for coffee, it wasn't easy to give up. All I know is that when I cut it out and switched to green tea, my symptoms became at least partially manageable. Coffee seems like it should be fine or even beneficial because of the antioxidants, but I've always felt it was dehydrating. Despite drinking lots of water, I would frequently get headaches at least once a month. Again now, I don't get headaches. So who knows, maybe it's just me who responds negatively to it.

[Guest]

Well I was a fiend for coffee, it wasn't easy to give up. All I know is that when I cut it out and switched to green tea, my symptoms became at least partially manageable. Coffee seems like it should be fine or even beneficial because of the antioxidants, but I've always felt it was dehydrating. Despite drinking lots of water, I would frequently get headaches at least once a month. Again now, I don't get headaches. So who knows, maybe it's just me who responds negatively to it.

Tea and coffee are diuretics..so it makes sense why you would get dehydrated. Every person will respond differently to different drugs. For some people, marijuana relieves pain, for me, it amplifies it. For some people coffee calms them, for me, I get shakey and can't stop moving. It's interesting the way we all work so differently.

[diydry]

Another question, how many doctors do you think study the current news on dry eyes? I believe the people in this forum have more to offer than most doctors because they're living it, trying new things, WE are the ones on the cutting edge aside from a few drug companies and researchers. They just don't have time to put into it unless it's their passion or they also have an ocular disease. My current doctor has dry eyes bad, so he gets it. Answer all my questions, makes my serum drops in house, cares about what I have to say and even he is limited on what he can do. He said to me, man, if you were in medical school right now you'd be the guy asking all the right questions. He felt I was as knowledgeable as he was to an extent, he literally said, you may know more about this than I do. That's scary!

Such great points. It is indeed very scary. Getting diagnosed has totally changed the way I think about healthcare. Before I almost slavishly trusted doctors to be my best advocate, but I realize that only I can be my best advocate, and while doctors should help to inform my thinking they shouldn't be the end all be all. They are simply too busy, there is too much knowledge out there for them to learn, and they can be disengaged if they don't suffer from the disease themselves. Plus, we know ourselves and our bodies better than anyone. I think elsewhere it has been written on the site about how to get the most of your doctor visit. When you think about it though, it IS scary that we have to "strategize" when visiting our doctor and maneuver to get the most out of the visit, especially when doctors only offer you 5 minutes of face time. Why can't we place our trust in health system to help us? Is that too much to ask? Also, I would love a doctor who has/understands dry eye and can make serum drops in house! So great that you found someone like this.

As for coffee, I find it does help my symptoms short-term but when the inevitable crash / fatigue happens later then my eyes get dryer, so I tend to avoid it. Everybody is affected differently, but I'm glad green tea seems to be working for the OP. I know others on this site have mentioned green tea as helping their symptoms a great deal.

[hopeful_hiker]

Do you experience the same, do you think awareness will grow?

You know, what's interesting, so many people actually have dry eyes but they do not understand they do. When I started having dry eye issues, a lot of complaints I have heard from other people, started to make sense to me. I hear a lot about the dry eye industry being driven by the baby boomers' demands. However, I actually think, it's the young people who will drive the research and the industry because millenials and those who are children now, have been using screens since they learned to poke on Ipads or since they went to elementary/middle school. I started staring at screens at the age of 13, my sibling at the age of 6.

[farmgirl]

I've said it before and I will say it again. When I joined this forum on 2012 I rarely heard of computer related dry eye, most of the posters were lasik induced victims. I have noticed a huge shift in that there are more and more young people like you DesertWind posting who have careers where they need to work on computers day in and day out. I predict it will become epidemic.

It scares me to see little kids with their faces glued to a tablet or cell phone because I fear for their future. Really we should be getting the message out to the parents through the school system of the dangers of overuse of electronic devices, it needs to start at home but you can't prevent it if you don't know it exists.