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Young people can get glaucoma too

Updated on December 19, 2016
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Isn't glaucoma something old people get?

Glaucoma not only affects older people. Babies, toddlers, teens and twentysomethings can get glaucoma as well. This means the young live most of their lives coping with the disease. If not diagnosed and treated early enough, glaucoma may lead to vision loss.

Here you will find my story on how I was diagnosed with glaucoma as a teenager. The treatment I have had and how I have coped with the disease. It's been a long journey.

I found it helpful to hear how other people have coped with this disease. There are links to personal stories of young people with glaucoma included in this page. Keep looking for information that can help you manage your glaucoma.

The photo of eye drops shows you the number I was on before they stopped working and surgery was then the only option for me.

What is the difference between glaucoma in the young to the old?

Having glaucoma as a young person is very different to having it when you are older. As a young person, I found that when I had surgery to make a new drain for my eye, the body sees this new drain as a wound and tries to heal it over.

The surgeon put medication in the eye to stop the body from healing this over, but a complication was that this worked too well and I had leakage from the wound. Then the challenge was to seal the wound. Which eventually, after a number of weeks, they did. But when you are older and you have this kind of surgery, the body is not as quick to try to 'heal' the new drain.

This kind of complication happened to me on both lots of trabeculectomy surgery. I was later told by my surgeon, that hey have since found it better to ut the medication further back in the eye to prevent this kind of problem. It is encouraging that they take note of the lessons learned and implement new ways to prevent complications. I have found that t hey have learnt a lot in the treatment of glaucoma in the last 30 years.

An example of vision loss encountered by some people with glaucoma
An example of vision loss encountered by some people with glaucoma

Living with juvenile glaucoma

Generally, Doctors say there is little need to alter your lifestyle when you have glaucoma. When you have been diagnosed with an incurable disease that you will have for the rest of your life, that means the taking of eyedrops, regular checkups with eyespecialists, and multiple operations, it is hard to believe that statement.

After the initial diagnosis, you may be in shock. You may be feeling frightened. I know I was. I was a teenager when I was diagnosed with glaucoma, a secondary glaucoma due to uveitius or irisitis (inflammation in laymans terms).

This photo gives you an indication of what vision may be like for a glaucoma sufferer. Myself, I have some vision loss in one eye. Generally the rest of the vision in that eye is quite blurred due to the 'clouds' which float around all the time. These clouds are apparently cell debris from the inflammation.

What is juvenile glaucoma?

I find it useful to search the web for information specifically on juvenile glaucoma. There is more and more out there being written every day. Keep looking, until you have the information that you need to make good decisions about managing your glaucoma.

Boy with glaucoma, Rwanda 2006.
Boy with glaucoma, Rwanda 2006. | Source

Learning about glaucoma

I found that the eye specialists talked in very technical language and I had a hard time understanding what they were talking about.

My diagnosis was: idiopathic unilateral posterier uveitis. I had lots of tests to try and discover why I had this. I remember the eye specialist saying that if I lived in a different country, I would probably have tb (tuberculosis) as this condition often accompanied tb. So I had all the tb tests, chest xray, skin mantou test. By this stage I was convinced that I would be sent away to a sanatorium and never see my family again (well, that's what I had read in books). The results came back that I didn't have tb (what a relief!) and they had no idea what caused the uveitis.

Years went by, before I really understood what it meant. Bit by bit, I found out the meaning of all those technical words.

Idiopathic = of unknown origin

unilateral = on one side

posterier = at the back

uveitis = inflammation of the uvea

uvea = the layer and structures beneath the white of the eye.

So I had inflammation at the back part of one of my eyes, and they don't know what caused it.

A couple of years later, I developed glaucoma. Possibly because of the treatment for the uveitis, which was steroids. At that time, the only thing I had heard about glaucoma was that old people got it and they went blind from it. So I was really scared.

Then the inflammation went into the anterior chamber (which is the front part of the eye). But by this time, I was used to hearing big words, I just knew it was bad news.

I was lucky to find information on the Glaucoma Foundation of Australia. I contacted them and for the first time I was given an explanation in terms I could understand. They had a regular newsletter with articles on glaucoma written in laymans terms and a question and answer section. This all helped me to learn about the disease, and its treatment.

I found that following an anti-inflammation diet really helped me as my Glaucoma was caused by inflammation. Benefits from dietary changes don't happen overnight. It took a long time for this to pay off.

What is glaucoma?

There are many types of glaucoma. This is all very confusing when you are first diagnosed. While there is no cure for glaucoma, there is often a lot that can be done in managing the disease. The first thing, I think, is to get some information so that you can understand what it means for you.

Surgery pirate
Surgery pirate | Source

My glaucoma treatment

I went on drops, which controlled the pressure for some years. Then the drops didn't control the pressure anymore and I needed surgery.

Glaucoma surgery can be complex in young people as the body tries to heal over the additional drain that the surgeons put in your eye.

As part of the surgery, the doctors put a chemical in the new drain to stop the body healing it over, but there can be complications in that the external wound doesn't heal properly. This happened to me and another young fellow that I know.

For me, this meant that the surgeons, after two more operations had failed to help, had to use a special contact lens on the eye to get it to heal. All this, while anaesthetic is used is still not exactly pain free.

I remember how this felt. Jennifer Knotts on the day of her surgery.

I have been on lots of different eye drops in my time. Many have had really horrible side effects. Stinging, redness, headache, to name a few. The good news is, the constant research into glaucoma means they are finding newer treatments with less side effects.

Eye hospital
Eye hospital | Source

Coping with glaucoma

Coping with the stress of juvenile glaucoma is not easy. Its challenging enough to be a teenager without being told you have a degenerative eye disease.

A diagnosis of juvenile glaucoma means that you are referred to a childhood glaucoma specialist. In my case I was lucky in that an excellent specialist was within 300km. Still, that's a 3hour drive and when you have to wait to be seen, (and you always have to wait) the visit to the eye specialist can take another couple of hours minimum. A three hour drive home and you have missed a whole day of school. Your parents have missed a day a work, as you're too young to drive. In later years you've missed a day of work. This is fine when everything is going ok and you only have to visit once every three months or so, but when things are bad, you may need to go more often.

I found that most specialists waiting rooms have few reading materials of interest to adolescents. The best thing for me was to take my music with me. I can listen to music for hours. When you are in hospital and can't read or watch tv and have to lie in a dark room, then listening to music is perfect. My mum bought me some talking books on cassette when I was in hospital for the first operation. I was in hospital for about a month, so talking books were a great way to pass the time.

waiting room at eye hospital
waiting room at eye hospital | Source

What is the standard treatment for glaucoma

There is currently no cure for glaucoma. Treatment of glaucoma is a way of managing the disease. Medication is the first option. Eye drops are regularly prescribed to assist in lowering the intraocular pressure in the eye and therefore limiting damage to the optic nerve. Once you are prescribed eye drops it is useful to find out what their side effects are. Information is helpful in minimising the stress assosciated with chronic disease.

Eye drops have one of two purposes. Either to decrease the amount of fluid in the eye or improve the drainage. For many people, eye drops are sufficient to manage their glaucoma. Sometimes eye drops aren't enough. This is when surgery is considered. Both laser and conventional surgery can be used to treat glaucoma.

Conventional surgery includes a number of different procedures. You may get to earn these new words: trabeculectomy, iridotomy, and goniotomy. These words get less scary as you talk to other patients who have been through these procedures and have had successful operations. These kind of surgeries are done on an inpatient basis. Laser surgery is usually done on an outpatient basis after the eye has been dosed with anaesetic drops.

Khamla Thipphasang, 34, prior to surgery for glaucoma in her right eye. Photo by Geoff Oliver Bugbee

Personal stories of other young people with glaucoma

It was a many years before I found anyone else young enough with glaucoma to talk to. Hearing about other peoples experiences with the same disease, was very helpful to me.

How to put in eyedrops

When I was first diagnosed I used to lie down on my bed to put in my eyedrops. It took years to find out how to do it, so that the drop was put in most effectively. You may find the technique described here helpful.

What about you?

I am also interested in finding information out from others.

How old were you when you were diagnosed with glaucoma?

I was 15 when I first saw an eye specialist and was diagnosed with inflammation of one of my eyes (posterior uvieitis, later changing to anterior uvieitus and even irisitis). Glaucoma came along in that eye when I was about 18. It took until I was 37 for the other eye to develop glaucoma. Possibly as a result of the steroids that I was taking to treat the inflammation in the other eye.

Does your eye specialist explain things to you in easy to understand terms?

I had no idea what my eye specialist was talking about. I had vaguely heard about glaucoma, all that i knew was that glaucoma happened to old people who just went blind.

Have you ever taken a drug teatment where the side effects were almost worse than the disease?

Because I have chronic uveitis I have often been on treatment for inflammation. I was on prednisone (steroids) for 5 years. After constant side effects of headache and nausea, every time I took a pill, I struggled with discomfort every day. I have now decided that I wont be going back to using steroid tablets again.

Age at diagnosis

How old were you when you were diagnosed with glaucoma?

See results

What's your experience?

Does your eye specialist explain things to you in easy to understand terms?

See results

Side effects from drug treatments

have you ever taken a drug teatment where the side effects were almost worse than the disease?

See results

Will a diagnosis of glaucoma limit my life?

A quote from the Glaucoma Research Foundation

"We are limited only by what we think we can or cannot do. You can continue with what you were doing before glaucoma was diagnosed.You can make new plans and start new ventures. And you can trust the eye care community to keep looking for better treatment methods for glaucoma. Take good care of your eyes, and get on with enjoying your life."

Life is what you make of it. I find that anything that I want to do, I do. I work, I have hobbies. I go for holidays overseas. I find it more helpful to focus on what I can do and even do well. I count my blessings and practice gratitude for the great family and friends that I have in my life.

Famous blind people with congenital glaucoma

Andrea Bocelli was diagnosed with congenital glaucoma as a child. He lost the rest of vision as a result of a blow to the head in a football game. Andrea is an excellent example of someone who has not let his glaucoma stop him from doing the things that he has wanted to do. Not only a talented musician and vocalist, he is a qualified lawyer.

My current situation

and updates

Whe I first compiled this lens I was in my early 40's. This is what I said then.

Currently I am in my 40's. I have lost some vision to glaucoma in one eye. I have had two surgical operations on one eye to put in extra drains. I have had laser surgery in the other eye and put drops in that eye to control the pressure. In my bad eye I have a cataract. The cataract started growing after the 2nd operation. I am pretty much blind in that eye and waiting for cataract surgery. Cataract surgery is generally simple surgery, but not when you have glaucoma, and are subject to chronic inflammation. Hopefully I can have cataract surgery this year and get some vision back.

I am night blind, so haven't driven at night for some time. As I work part time, I can go in early and avoid coming home in the dark. Last year I fell down the back stairs at my parents place as the light wasn't on. These days, I try to avoid going out at night at all.

UPDATES

I had cataract surgery in April 2009 and all went well. I have vision back!! Its not 100% as I have debris from the inflammation blocking the sight a bit, but it is certainly more than I had. :))

I now have my new glasses. I able to see a bit clearer with these new ones, and the best news of all is that they help my night vision. I have started driving again at night - just locally. woohoo!

A checkup in November confirms that my vision in that eye continues to improve. For some time after the surgery my vision in the eye with the new lens was jumpy. That has completely settled down now. I have also noticed that I am no longer bruised down that side of my body, so my perception on that side is obviously much better as I used to run into things a lot. There is of course still a great deal of 'debris' from the inflammation which impedes my vision as it floats in front of my eye. Hey - but things are a lot better than they were :)

July 2011 Recently I have noticed my vision in the bad eye is deteriorating again and my depth perception is not great. Figured this out after burning my hand on the oven and not quite pouring coffee into the cup. Oh well, I have been here before and know what its about, just have to adjust...

September 2011 They keep a membrane in the eye after the old lens is extracted, now there is a wrinkle in it. Laser surgery will fix this. Maybe next year.

January 2012. Eyes stable. Found out the technical term for what I said in September is : Posterior capsular fibrosis. What is it exactly : after cataract surgery it is quite common for the membrane of the capsule that holds you artificial lens to become cloudy. So the vision becomes blurred as a result. Laser surgery will get rid of the membrane and voila ! vision is restored.

September 2012. Eyes stable. First time in over 20 years that I don't have to go back to Sydney eye specialist for 12 months. Woo hoo!

June 2013

Check up at local eye specialist. Eyes stable, vision stable, no progression of disease. Inflammation may have burned itself out. Apparently it can do that. I remember them saying something like that in about 1990, after 5 years, I gave up waiting and figured that wouldn't be happening for me. I have had inflammation for 30 years. For it to burn itself out, is glorious news indeed.

September 2013

Check up at Sydney eye hospital. Eyes continue to be stable, vision stable, no sign of infammation. Wonderous news! I have been discharged from the eye hospital in Sydney and can now be managed locally. Major Woo hoo! Will still need laser surgery on the membrane covering the artificial lens, but that will only be done when the vision i that eye gets bad enough to warrant the risk.

February 2015

Had yag laser surgery done, got quite a bit of vision back. Don't have to go back for 12 months. Hooray!

February 2016

Eyes Stable, can get new glasses prescription, wasn't worth it before, vision changed too often to be of much use.

Its all relative - Talk about it

Talk to your relatives about your family eye health history as some eye conditions, such as glaucoma, can run in families.

It is important to realise that glaucoma is a disease which young people battle as well as older folk. I am still amazed to hear that some optometrists and eye specialists don't recognise this fact.

Little Blessjah Adegoke has a cuddle with his father after his eye operation.

©Clare Louise Thomas/ORBIS

Information and support

The first time I learned about what glaucoma was in laymans terms was when I found a phone number on a bookmark, i think it was, at my eye specialist for Glaucoma Australia. I was in my early 20's by that stage.

I rang the number and spoke to a fabulous lady who also had glaucoma. She signed me up for the newsletter. I avidly read this publication every time it was sent out to me. Slowly I realised that this condition wasn't going away, and I was going to have to deal with it for the rest of my life.

I contacted the lady again at Glaucoma Australia and asked if there was a local support group in my area. There wasn't, but another person was interested in setting one up. An add went into the next newsletter to propose that interested people met.

There were I think 6 of us who started up the support group. We would meet every so often at a room provided by the local hospital. We would arrange for a guest speaker. It was also interesting to share experiences with other people in the group.

I was of course the youngest in the group by about 50 years. I was the only one who was working, everyone else was retired. So I had to make up time from work in order to attend the meetings as they were on a week day in the morning.

I was with this group for a couple of years. I found that it was very sad when members of the group started passing away, a number were after all in their 80's. This showed the difference to me in living with glaucoma as a young person. The others had been diagnosed later in life, many were only on drops which controlled their glaucoma. A couple of people had had surgery, one operation, which worked fine. I had already had 3 operations with complications and a probability of more to come.

I stopped going to the group, after I decided that the differences between being young and having glaucoma and being older and having glaucoma were too great.

I then became a contact person for young people with glaucoma for Glaucoma Australia. I had this role for many years. Newly diagnosed young people would either write to me (this was in the days before email) or talk to me on the phone. I guess I am too old now to relate as well to newly diagnosed young people. But that's ok, I have found many more contacts through this webpage.

Glaucoma: What Every Patient Should Know: A  Guide from Dr. Harry Quigley
Glaucoma: What Every Patient Should Know: A Guide from Dr. Harry Quigley

a good introduction, is to read about general glaucoma. This does have a couple of references to juvenile glaucoma.

 

Assistance with everyday living

Late last year I found out about the services which Vision Australia provides to its clients. A colleague of mine suffered a stroke on her eye, this meant that she lost vision overnight in one eye. This would have been a terrible shock. As part of her quick journey into the world of vision impairment she was referred to Vision Australia. When they came in to do a workplace assessment for her, I got to talk to them as well.

Vision Australia is all about helping vision impaired people live independently. Sounded good to me. I contacted them, and became a client of theirs as well. They had a look at my workplace and helped me figure out what sort of lighting suited me best (I am very glare sensitive due to the glaucoma).

Next I met an occupational therapist who gave me some excellent strategies for use at home. As I have very poor depth perception, I regularly bump into things, miss pouring hot water into coffee cups and burn myself on the oven. This generally gives me the clue that my vision is changing again and I need to make adjustments. Which is fine, but they helped me with ways to avoid burning myself with hot liquids.

One easy technique is to rest the jug or kettle on the lip of the cup and then pour. I always poured at a height, which was difficult as where I thought the cup was, wasn't necessarily correct.

I also discovered with the help of Vision Australia that I have poor contrast perception. This means that things of a similar colour tend to disappear, until they are against colours which are quite different. This explained why things and people would appear, seemingly out of nowhere on my left hand side.

I have also got really good at listening. I tend to hear things or people on my left hand side, way before I see them. Another good tip is to keep turning my head, so that I can check things on my left with my good eye.

All little things, but they have made quite a difference in my everyday life.

Living with vision loss

Vision loss doesn’t have to mean the loss of independence or quality of life. With the right support, people who are blind or partially sighted can do almost anything.

Glare sensitivity

Too much bright light gives me headaches. I have a few strategies to prevent this. First, I have transition lenses on my regular glasses. These change with the light really quickly. They are not quite dark enough for really bright situations.

For this, I use fitovers. These are sunglasses which fit over my regular prescription glasses. They come in a variety of styles. So I could pick the ones which suited me current glasses best. These were really helpful when recently, I was at a conference where the walls of the room were painted white and one wall was made up of almost entirely of floor to ceiling glassed windows. The bright light just bombarded me, and I had a headache before too long. So, I wore my fitover sunglasses in doors. Looked a bit strange, but prevented me getting a headache. So it was worth it.

Another thing I do, is, at home, have a silver piece of fabric which I can put behind any curtain. This essentially makes all my curtains blockout. Yes, sometimes it feels like I live in a cave, but it helps.

My transition prescription glasses, fitover sunglasses and low vision badge.

Photo by ashroc.

Mobility

for the visually impaired

As part of the services that Vision Australia offer, was a mobility therapist. I had mentioned that ii had difficulty on uneven surfaces. She and I went for a walk where I discussed my experiences. The therapist gave me information, such as, what the raised bumps are for that you see near bus stops and ramps in the gutters for prams etc to use. They indicate to vision impaired people with canes that the area immediately in front of them has suddenly and quite dramatically changed. So that was new information for me. In the photo to the left there are raised bumps at the top and bottom of a flight of stairs. Photo by ashroc.

I find that I am ok on footpaths, it is the dirt and grassy areas that can be problematic for me. While I am fine in areas that I know well, in new places, I can easily trip or stumble. What I am practicing now, is when I am in a new area, to stop for a minute, look around at the terrain, so that I have more idea of what is up ahead.

When I am travelling to different cities or towns, I sometimes bump into people on my left hand side. Vision Australia also provides its clients with a badge that says "I have low vision". I wore this recently on a trip overseas. I found that people who worked in airports and for taxi companies were so helpful in asking if I needed assistance. As sometimes I did. Airports can be quite confusing, even for people who can see quite well. From the rest of the general public, I noticed a variety of reactions. Most people, gave me a really wide berth, which was great, as this meant I didn't run into anybody accidentally. Some people were quite disconcerted though, so I think it was probably a good educational tool as well. A small boy, pointed out to his mother in a supermarket 'Mum, there's a blind lady.' Many of us, look quite like everyone else, but have a disability. So it was an interesting and useful experience. I will use my badge again when I travel.

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    • profile image

      Michael 13 months ago

      Hi I have been blind in my right eye since I was four due do Glocoma I was wondering when any of you that have Glocoma did you have one eye that's bigger then the other I did and I guess you can say I still do this was really hard on me in grade school for I was teased all the time big eye little eyei have been blind in my right eye since I was 4 and not knowing what it was like to have two eyes other then being teased alm the time and I mean all the time because of the size of my right eye. But other then that my life has been for the most part normal I'm now 55 and just lost my right to drive because now it's started to spred to my left eye I was a logger for the most part of my life or should I say 15 years of my life then I was a pipe layer until last year when they forced me to retire in fear that I might hurt someone because of my sight as far as everything else I was one of the best pool shooter you have ever played with I can throw darts and get trip 20 at any time hit the bullseye I did every thing any one else could do played baseball in high school box for our city's boxing. Club so there is life after losing sight in one eye I count my blessing that I still had the left eye it's been good to me so for all you who think you might not be able to do things just remember the little engine that could and know have faith in your self God loves you and he has faith in you so keep on loving your self and may the God him self bless you all the way

    • profile image

      crystal 17 months ago

      I was detected glaucoma at age 12 I'm now 16, sometimes it gets to me like wow I'm going to have this the rest of my life.. but you get used to it, I just wish I was normal.

    • profile image

      Winni 23 months ago

      Thank you for caring so much, but I usually don't feel comfortable talking about it. Is there a chance that I might go blind?! I'm really scared because I have dreams to reach, and I made tremendously good grades to start off my goals. I do accept myself for who I am, and I am proud of my brain for helping me make it to the Junior Scholars Program. Also, I hope your life is going well, and again, thank you so much for talking me and making me feel better.( have you had eye surgery? If so, does it hurt?)

    • profile image

      Lilac 23 months ago

      Hello, winni.

      I hope you are coping well with your current situation. 13 is a young age, and I know very well how you feel. It's just so hard to imagine your ideal future ahead, but worry not the medicine will keep your eyes safe. although it's incurable, it's maintainable.

      I am diagnosed when I was 16 and 3 years later the depression manifest itself within me. I just want to tell you that, you are not alone. I feel lost most of the time, especially when the daily life is so demanding, but I tried to be positive, even though it's hard. just take life as it is, don't stress yourself. find your inner peace, and accept yourself by sharing your stories to people close to you. hope this helps

    • profile image

      winni 2 years ago

      Hi everyone. I currently have glaucoma and, I just found out. At first, I was really frighten. If anyone is wondering, I am only 13. I am having a hard time dealing with this, because it was very unexpected. It still scares me to know the fact that glaucoma is uncureable. I am afraid that any day now, I will go blind. I still have a long future, and I do not want my goals and dreams to be destroy because of glaucoma. If anyone has a suggestion for my "problem", please reply. I am depressed with this situation and kept being negative about it.

    • ashroc profile image
      Author

      ashroc 2 years ago

      Hi Justin

      I was diagnosed at 16 and have had glaucoma for 31 years.I think being diagnosed early is important in retaining your sight for as long as possible. There has been significant change in the management and treatment of glaucoma since my diagnosis. What was very tricky 20 years ago, is more commonplace now with laser surgery, keyhole surgery for cateracts etc. Who knows what will be discovered in the next 50 years! You are not alone Justin.

    • profile image

      justin 2 years ago

      hello, im 17 and i diagnosed glaucoma, i wonder is it possible for my eyes to last more than 50 years? ( let's assume i will die at age 70 although average american males die at age 78) my doctor also told me the glaucoma cure research is basiclly impossible in lifetime, im really afraid about my future

    • profile image

      GetContactLenses 3 years ago

      I was diagnosed with high ocular pressure pretty early in high school- I am an oboe player, and my doctor actually tested my pressure while playing my instrument to see if it was contributing to the issue, but the tests were pretty inconclusive. I am now in my mid 30's and my pressure has stayed about the same, but I still watch it very carefully.

      Thanks for the lens- you have a nice community feeling here.

    • profile image

      Ibidii 3 years ago

      So happy things are progressing well for your vision Jennifer! I am glad to see all the good services in your country for help for young people and others with glaucoma and other eye diseases! May the Lord bless you! :)

    • profile image

      Ibidii 4 years ago

      Awesome lens Jennifer. I have vision problems also. I have many lenses about it. I am so glad that your eyes are stable right now! :D

    • Erin Mellor profile image

      Erin Mellor 4 years ago from Europe

      I'm fortunate as I still have good vision, and my glaucoma is progressing slowly. Waiting rooms are really rubbish, it's not like you can read to amuse yourself after having your eye anaesthetized. I have an older relative with very poor vision, so your badge idea would be brilliant for her as she still likes to travel independently. Excellent lens.

    • ashroc profile image
      Author

      ashroc 4 years ago

      @anonymous: hi Ria

      I am sorry to hear that you have had such a difficult time.  It is unfortunate that your initial doctors didn't know enough about glaucoma, to be aware that it happens to young people too. Yes, it is important to stay positive and I understand how difficult that can be when so many things are going wrong.  You have your whole life ahead of you.  There are many things that you can do, despite being vision impaired. 

    • profile image

      anonymous 4 years ago

      I have had glaucoma since the age off 22 now, I went to see my optician they saw my pressure was high they didn't think to worry I was really scared I knew something was happening To me yet I couldn't get anyone to see me seriously I went to doctors eye specialist they told me no I'm being silly I can't have glucoma because I'm too young, at the end my family saw how depressed I was getting I felt like I was losing sight and no one was taking me seriously, I ended up paying out to see someone private and they realized I had glucoma and it was quite serious at this stage I had lost my right eye completely just an see a little bit but in a blur and half of my left, my journey was soo hard I had just passes my driving and now they tell me I can't drive again I felt like my world was falling apart and kept saying why me, life felt meaningless I lost my confidence life was really hard , two years on I'm kind of copping now life is a bit better I keep myself going thinking at least I ain't fully blind and have some sight, whatever is meant to happen it will happen we either sit there doing nothing feeling sorry for ourselves or be positive and make the most of our life.

    • ashroc profile image
      Author

      ashroc 4 years ago

      @anonymous: Thanks for your comment Lizzie. I understand what you mean about being self conscious about how your eyes look. After 3 ops in 3 weeks, my left eyelid drooped. It stayed that way for years and will droop these days when i am tired. I just think now that it is part of me and am grateful for the vision that I have. When you meet someone who loves you for who you are on the inside, you will know that it is what counts.

    • Andrea RM profile image

      Andrea RM 4 years ago

      Thank you for writing this. It goes a long time creating awareness of the fact that some diseases most people think are "old people problems" can also affect the young. My dad has glaucoma and he was diagnosed late, though his symptoms began when he was in his early 20s. Because of that, he has almost completely lost his left eye vision (though he's learnt to adapt well).

    • profile image

      anonymous 4 years ago

      It is true. Young people can get glaucoma. I have had it since i was born. Scince i was diagnosed, i have had 10 eye surgries. I am now 16 years old. Im really self consious about my eyes. And i often wonder if i will ever get married because my eyes look a little different. But people tell me that because i have glaucoma, my eyes look more beautiful . Since i have had gluacoma, i have learned to see more with my heart than with my eyes.

    • ashroc profile image
      Author

      ashroc 4 years ago

      @anonymous: Thanks for your comments.Yes I have had some bad experiences, but I have had good ones as well. I have had this disease for over half my life, but I still have plenty of vision. I try to concentrate on the blessings that I have. Great family and friends. The ability to live independently and it doesn't really stop my doing from anything I want to do.

    • profile image

      anonymous 4 years ago

      Hello, thank you for this... It makes me sad reading your bad experiences with the disease, i have glaucoma on both eyes 25 percent of my both vision is already lost, and sometimes the drops don't work, i was diagnosed just last year well im 28 right now but i believe i have this disease when i was still teenager,. I decided to have it checked because my migaraine is so severe that i will have fever and vomiting and can't even stand. I have a 4 old daughter and i want to see her grow up, it just makes me sad :(

    • Jeri Baker profile image

      Jeri Baker 4 years ago

      Thank you for sharing your story. Great information. I have a low vision lens. My husband had diabetic retinopathy he was in his 20s.Your lens will provide tremendous support for other young people with vision problems. Thanks.

    • profile image

      anonymous 4 years ago

      Thank you for this. This was the first well-written thing I have found after doing massive internet research, which either a.) freaked me out or b.) made me feel like a freak for being so much younger than the average person diagnosed with Glaucoma. Best of luck with everything.

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      anonymous 4 years ago

      Very helpful Thanks!!!!

    • familialmediter profile image

      familialmediter 4 years ago

      Appreciate this info here...thank you for sharing such valuable content. Young people must be aware of these types of challenges. Great lens!

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      sandi_x 5 years ago

      Thank you for sharing your stora with us. Nice lens

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      anonymous 5 years ago

      Thank you very much for posting this article... I am 14 and was just diagnosed with glaucoma in my left eye. It runs in my family and I'm going to see a specialist next week to see what treatment I can receive. I have very poor vision in both eyes and was very worried about losing my sight in my left eye but your article has given me a glimmer of hope about treatment and surgery. I didn't know glaucoma was prominent in my family until a few days ago when I was told I had it and since then I've been doing all I can to learn about what exactly glaucoma is and how if affects me.

    • profile image

      anonymous 5 years ago

      Your article was very helpful, I was diagnosed at 16 now I'm 20. I am just as stressed now as I was then. I have tunnel vision now and am still on drops I go in in a few days fir my check up. Its nice to know I'm not alone

    • ashroc profile image
      Author

      ashroc 5 years ago

      @pixelposy: It's good that your pressures are monitored since they are on the high side. It's even better that you don't have glaucoma. Luckily for a few people high pressures don't automatically mean glaucoma.

    • pixelposy profile image

      pixelposy 5 years ago

      Thank you for sharing your story. I've been monitored for abnormally high pressures since I was about 25. Thankfully I haven't been diagnosed with glaucoma, but it's always on my mind!

    • ashroc profile image
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      ashroc 5 years ago

      @anonymous: Hi Emily, That is distressing, I understand how scary that is. You can find out if you have lost vision by having a visual fields test. The important thing now is to manage your glaucoma. I concentrate on keeping as much vision as I can for as long as I can. If you are unhappy with your Doctors, change them. It is your sight and you deserve to be told the truth.

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      anonymous 5 years ago

      Your information was helpful. I am currently 18 years old, and all my life I have struggled from eye issues. When I was two they found out that I have childhood cataracts. I have had six eye surgeries since. For the past six years the doctors have told me that they are trying to prevent gluacoma, however one finally told me the truth and said I have actually had it for six years. They told me this two weeks before I went off to college. I don't know how long I have, and how much my sigh has decreased, and it scares me very much.

    • profile image

      anonymous 5 years ago

      Your information was helpful. I am currently 18 years old, and all my life I have struggled from eye issues. When I was two they found out that I have childhood cataracts. I have had six eye surgeries since. For the past six years the doctors have told me that they are trying to prevent gluacoma, however one finally told me the truth and said I have actually had it for six years. They told me this two weeks before I went off to college. I don't know how long I have, and how much my sigh has decreased, and it scares me very much.

    • profile image

      anonymous 5 years ago

      I'm 15 years old. I don't have glaucoma, but my optic nerve is overtly large and the pressure is as high as it can be before my eyes are damaged. My eye doctor is worried that I might get glaucoma (as it also runs in the family) and I'm kind of worried. Though, another theory they have is that it may just be how I was born and I'll be (for the most part) okay. Anyway, I found this very helpful. Thank you. :)

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      anonymous 5 years ago

      Thanks for the great information. I have glaucoma and other eyesight problems in one eye and suffer night blindness too. I am taking macuvision vitamins to help with my sight and as far as I know it hasn't got any worse. I may have to have surgery next year though.

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      anonymous 6 years ago

      Thank you so much for sharing your experience, and this useful information with us. My mom and aunt had glaucoma, so I get regular eye tests, but fine so far. I use herbs, vitamins and mineral supplements to keep me and my eyes in good shape.

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      anonymous 6 years ago

      Great information and thanks for your sharing, Have a nice days.

    • profile image

      anonymous 6 years ago

      Great information about glaucoma, dos and don't s.. Im gonna share this to my friend who has a glaucoma, she'll be happy for this..

      ~zimmer nexgen recall

    • Philippians468 profile image

      Philippians468 6 years ago

      thank you for sharing this informative lens! i believe many will benefit from what you shared! cheers

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      anonymous 6 years ago

      Thank you for posting this information about juvenile glaucoma and your personal experience with it. I am an adult living with congenital glaucoma myself. I have started the Congenital Glaucoma Network (http://congenitalglaucoma.ning.com/) to facilitate discussion, provide support, and promote awareness of congenital and childhood glaucoma. I encourage you and your readers to join our network. Best wishes!

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      anonymous 6 years ago

      Great article it helped me much. You can find here many informations. http://stop-glaucoma.info

    • ashroc profile image
      Author

      ashroc 6 years ago

      @anonymous: Hi Olivia: in my bad eye i have had trabulectomies 1 trab, 2 repairs, bleb failure and a repeat trab, so a similar story to yours. 14 years since the last trabulectomy. and a cataract removed 18 months ago.

      in my good eye i have had 1 iridotomy (laser surgery). this was 4 years ago. Feel free to keep in touch.

    • profile image

      anonymous 6 years ago

      @ashroc: what operations did yupu have? trabeculectomy?? had 1 trab 4 repairs, bleb failure and a repeat trab

    • ashroc profile image
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      ashroc 7 years ago

      @anonymous: No worries. My first op had complications, so i needed 2 more ops within 3 weeks. I understand how tough it is. I wish you and your son all the best.

    • profile image

      anonymous 7 years ago

      @ashroc: Sorry for the mistake. Anyway thanks for sharing your own experience, this is not gonna be easy, specially once you know he`ll have to go on surgery more than one time.

    • ashroc profile image
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      ashroc 7 years ago

      received this comment from someone who wasn't logged in:"Hi, my son is also 18 and has been diagnosed with primary close angle glaucoma&PLATEAU IRIS syndrome. we are scheduled for surgery on June, after medication and laser have been failed, Reaaly scared about it. What's your son's type of glaucoma?"

      My reply: I think you are confusing me with someone else who left a comment below. I have secondary glaucoma caused by irisitis. I have had 4 operations on my bad eye and 1 laser op on my good one. I am always scared before an operation. I use stress management techniques to help me such as deep breathing. I listen to music on my Ipod. I have hobbies such as painting, photography and drawing to take my mind off a pending operation. I had a panic attack in the eye specialist's waiting room not long before a pending op, I had to leave, do my deep breathing, get a bottle of water and settle myself before I could return. They have learnt a lot about glaucoma ops since they did my first one in 1994.

    • profile image

      anonymous 7 years ago

      @anonymous: Hi, my son is also 18 and has been diagnosed with primary close angle glaucoma&PLATEAU IRIS syndrome. we are scheduled for surgery on June, after medication and laser have been failed, Reaaly scared about it. What's your son's type of glaucoma?

    • blue22d profile image

      blue22d 7 years ago

      Wonderful lens and a topic of importance. Thanks for making it to help with public awareness. ***** to you and a lensroll to my lens: Best Online Reference. Hope you will stop by.

    • ashroc profile image
      Author

      ashroc 7 years ago

      I am sorry to hear about your sons diagnosis on top of his other health conditions. It is hard enough being a teenager without dealing with doctors, drugs with side effects and coping with having a lifelong disease. Take heart that your son is not alone, he has your support :) My mum came to every eye specialist appointment with me for years and years. She sat in the waiting room and knitted many jumpers waiting for me. Just knowing she was there helped a lot.

      You and your son are welcome to keep in contact with me.

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      anonymous 7 years ago

      Today, my 18 y/o son was diagnosed with border line glaucoma. He is on drops since today. I'm quite disappointed because he has some other health issues. Too many for a teenager I think. It was good to read your story. And you're right, doctors talk to you in a way that is hard to understand.

    • ashroc profile image
      Author

      ashroc 8 years ago

      [in reply to GlaucomatousJuvenile]

      It is scary. I found that eye drops kept my glaucoma under control for many years. When it got worse and needed surgery, this controlled the glaucoma as well.

      I think that because I was diagnosed early, this gave me the best chance of keeping my vision for as long as possible. I stopped driving at night because of the cataract, but this was 25 years after diagnosis. The cataract was a result of the glaucoma surgery, but since that has been removed, my vision has returned to what it was a few years ago.

      I have also found that treatment for glaucoma is improving all the time. A lot of research is being done in many countries. New drops with less side effects are available. The surgery has also improved in the last 15 years. While there is no cure.... yet ... there is good management of glaucoma.

      Feel free to keep in touch with me.

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      anonymous 8 years ago

      Hi, thanks for the story, I have been diagnosed with glaucoma a couple of months ago and I'm 30 years old... I'm on drops and really frightned about the potential complication...

      Did your glaucoma really slowed down when you started taking your medications or your operation ?

      When did you have to stop driving at night ?

      Thanks,

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      Johann The Dog 8 years ago from Northeast Georgia

      I had no idea! Thank you for sharing your story and getting the word out! Woofs, Johann

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      singaporehosting 8 years ago

      Quite surprising that young people can get glaucoma. I better take good care of my eyes.

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      tdove 8 years ago

      Thanks for joining G Rated Lense Factory!