Young people can get glaucoma too
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.
- Glaucoma surgery
What does surgery for glaucoma mean? There is conventional surgery and laser surgery. I have had both.
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.
- Glaucoma in older children and adolescents
causes of childhood glaucoma, treatment and research
- Juvenile glaucoma
good info on juvenile glaucoma and the next pages in the website have good illustrations on glaucoma which explain some of the technical terms specialists talk about
- Treating childhood glaucoma
How pediatric glaucoma is treated differently than adult glaucoma
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.
Foods that fight inflammation
- 10 Foods That Fight Inflammation : Tea
Fight back against the damaging effects of inflammation with these super-healthy foods.
- 30 Best Anti-Inflammatory Foods | Eat This Not That
These healing foods attack inflammation by increasing the concentration of beneficial bacteria in your gut, turning off inflammatory genes, and decreasing levels of pro-inflammatory biomarkers—many of which will torch fat in the process.
- Foods that fight inflammation - Harvard Health
Pro-inflammatory foods include fried foods, sodas, refined carbohydrates, and red meat. Green vegetables, berries, whole grains, and fatty fish are thought…
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.
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.
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.
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.
- National Glaucoma Week - personal story from Queensland
Ted Thorburn was born with glaucoma. Read his story on how he has coped with glaucoma and vision loss.
- Web forum from Prevent Blindness America
Includes a number of personal stories from other young people with glaucoma
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?
What's your experience?
Does your eye specialist explain things to you in easy to understand terms?
Side effects from drug treatments
have you ever taken a drug teatment where the side effects were almost worse than the disease?
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
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.
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!
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.
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.
Had yag laser surgery done, got quite a bit of vision back. Don't have to go back for 12 months. Hooray!
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.
Â©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.
a good introduction, is to read about general glaucoma. This does have a couple of references to juvenile glaucoma.
- Glaucoma Australia
An Australian organisation, dedicated to supporting sufferers of glaucoma and related eye disesases. They also provide education to the general public on glaucoma and raise funds for glaucoma research.
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.
- Vision Australia
Services and resources for people with low vision.
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.
- Practical support for everyday life
Practical tips to help you see beyond vision loss in everyday life
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.
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.
Your comments are welcome