Young people can get glaucoma too
Ranked #1,225 in Healthy Living, #24,080 overall | Donates to Save the Children
Glaucoma affects young people as well as the elderly
Glaucoma not only affects older people. The young can get glaucoma as well. This means they 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.
There are a couple of videos from youtube which explains glaucoma and what it is in easy to understand terms. I found it helpful to hear how other people have coped with this disease. Links to personal stories of young people with glaucoma are included in this page. Keep looking for information that can help you manage your glaucoma. To this effect I have plenty of links for you to work through to organisations which have good information on the disease.
I have designed some items on zazzle which promote supporting research into glaucoma. Proceeds from the sale of these items are donated to support glaucoma research.
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.
There are a couple of videos from youtube which explains glaucoma and what it is in easy to understand terms. I found it helpful to hear how other people have coped with this disease. Links to personal stories of young people with glaucoma are included in this page. Keep looking for information that can help you manage your glaucoma. To this effect I have plenty of links for you to work through to organisations which have good information on the disease.
I have designed some items on zazzle which promote supporting research into glaucoma. Proceeds from the sale of these items are donated to support glaucoma research.
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).
Learning about glaucoma
I found that the eye specialists talked in very technical language and I had a hard time understanding what uveitis (inflammation) was and what glaucoma was. At that time, the only thing I had heard about glaucoma was that old people got it and they went blind from it.
Years went by, before I really understood what it meant. 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.
Years went by, before I really understood what it meant. 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.
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.
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.
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, thats 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 youre too young to drive. In later years youve 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 cant 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 rooms
Why is it so difficult to provide a friendly waiting room?
Once you have a chronic disease you spend what seems like years waiting in waiting rooms. Why can't they provide a friendly waiting room? One with a toy room for kids, I am yet to find one even with a TV. Or DVD's would be useful too! As you are there for absolutely hours at a stretch. Yes, many people with low vision can watch TV. How about an internet kiosk with free internet, sponsored by a company with lots of money that wants to advertise?? It would certainly pass the time. - Child friendly consulting rooms
- An example of an opthalmology practice which thinks of the patients comfort beyond their medical condition.
Tatty gossip magazines in Doctor's waiting rooms are a bit old hat now. Perhaps they should move with the times and get some electronic distractions for their patients while they wait. Distractions are good. Often people have travelled for hours to get to a specialist waiting room, so waiting while having little to keep you occupied can be nerve wracking.An example of an internet kiosk which provides free internet access, paid by a sponsor.
This particular one is in a travel lounge for travellers who have to wait. See the connection?
Books on glaucoma
from the patient's point of view
Here are a few suggestions.
One 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 would 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 to well and I had leakage from the wound. Then the challenge was to seal the wound. Which eventually they did. But when you are older and you have this kind of surgery, the body is not as quick to try and 'heal' the new drain.
My current situation
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 wasnt on. These days, I try to avoid going out at night at all.
UPDATE
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 :)
update 2010- 2011
The inflammation and pressure remain stable.
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.
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 wasnt on. These days, I try to avoid going out at night at all.
UPDATE
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 :)
update 2010- 2011
The inflammation and pressure remain stable.
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.
Standard treatment for glaucoma
Glaucoma Treatment
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.
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.
Personal stories of other young people with glaucoma
- Life changes: living with glaucoma
- Eilish Clarke, a busy mum from Cavan, was born with glaucoma. Here she outlines her experiences with the condition and how she coped with sight loss.
- 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
Khamla Thipphasang, aged 34
Vientiane, Laos
Khamla Thipphasang, 34, prior to surgery for glaucoma in her right eye.
Photo by Geoff Oliver Bugbee
Links specific to juvenile glaucoma
- Glaucoma in older children and adolescents
- causes of childhood glaucoma, treatment and research
- Children's Glaucoma Foundation
- information to educate the public about childhood glaucoma.
- 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
- Childhood Glaucoma and Education
- Contains great tips for your child in the classroom
- Treating childhood glaucoma
- How pediatric glaucoma is treated differently than adult glaucoma
- American user group - young people with glaucoma
- Contact with others who share similar issues with glaucoma can help
Jennifer Knotts
Surgery Pirate
"The day of surgery where the doc implanted a filter in my eye. Yes, I am the Bionic Woman." Photo courtesy of Jennifer Knotts.
Age at diagnosis
Loading poll. Please Wait...
What's your experience?
Loading poll. Please Wait...
Side effects from drug treatments
Loading poll. Please Wait...
Boy with Glaucoma
Rwanda, 2006
Photo courtesy of Todd Smith.
famous blind people with congenital glaucoma
powered by 5min
Organisations providing information for patients and their families on glaucoma
- Glaucoma Australia
- Information for patients and their families on glaucoma
- Glaucoma New Zealand
- Glaucoma NZ aims to enhance public awareness about glaucoma,support and inform people with glaucoma
- The Glaucoma foundation (New York)
- The Glaucoma Foundation funds groundbreaking research and educates the public about the disease and the importance of early detection to prevent blindness.
- The American Health Assistance Foundation
- The American Health Assistance Foundation Recognizes January as Glaucoma Awareness Month. This site contains info on living with glaucoma, glaucoma treatment and research. Newsletters and publications are available here.
General glaucoma links
- What is glaucoma?
- good explanation on what glaucoma is in easy to understand terms
- Newly diagnosed with glaucoma?
- Glaucoma facts, medications and eyedrop tips
- What tests do they do for glaucoma?
- An explanation of the sorts of tests you may have and what they mean
- What parts of the eyes are affected by glaucoma?
- Easy to understand terms used to describe the parts of the eyes affected by glaucoma and what this means.
- What creates pressure in the eye?
- A good explanation about eye pressure, fluid and drainage and includes diagrams
- Does Increased eye pressure mean glaucoma?
- Glaucoma and eye pressure are commonly thought to be related. Increased eye pressure does put you at risk for glaucoma, but it doesn't guarantee that you will get the disease.
- Recovery after glaucoma surgery
- An overview of what to expect during recovery, as well as information on potential glaucoma surgery complications.
- Patient's guide to glaucoma
- Good information on the eye and how it works, types of glaucoma, diagnosing glaucoma, who is at risk and treatments, explaining possible side effects.
- Living with glaucoma
- Article about the advisability of various daily activities when you has glaucoma, and about how drops fit in.
- Glaucoma Progression
- Because glaucoma occurs in several different forms, the changes to a person's vision vary depending on the type of glaucoma they have.
- Uveitis backgrounder on corticosteroid treatment
- There is a major need for a safe, effective, and approved medication for the treatment of uveitis, especially
for the more severe forms of the disease. Though steroids are effective in quickly controlling inflammation,
they cannot be used long-term without incurring serious side effects. New treatment alternatives are
required that allow corticosteroids to be tapered off to levels not associated with long-term morbidity, or
eliminated altogether, while providing effective control of the chronic eye inflammation. - Products for sale to help support glaucoma awareness
- The glaucoma Australia shop sells cards, wallets for eyedrops, stickers and badges promoting glaucoma awareness
- Explanation of Irisitis Uveitus
- A good explanation on Irisitis Uveitus that is clear and easy to understand.
As this website explains: "In serious cases, complications may arise. Cataracts, glaucoma, and corneal changes are possible consequences of both the disease and the medicines used to treat it." This is what has happened to me. - Eye drop tips
- Prescription eye drops for glaucoma help maintain the pressure in your eye at a healthy level and are an important part of the treatment routine for many people.
Research into glaucoma
Current research projects in relation to eye pressure, genetic factors and treatments
- National Health Assistance Foundation
- National Glaucoma Research - current research projects
- The Glaucoma Foundation Research Grant program
- The Glaucoma Foundation funds research initiatives to determine the causes of glaucoma, to improve methods of treatment, and, ultimately, to develop cures for the various kinds of glaucoma.
- National Glaucoma Research on Facebook
- National Glaucoma Research (NGR), a program of the American Health Assistance Foundation, funds research to find a cure and educates the public about glaucoma.
- Glaucoma Research Foundation : Pilot Project Grants Awarded
- Each year the Glaucoma Research Foundation awards pilot project research grants to worthy investigators with innovative ideas. Following are summaries of grants awarded annually from 2006 through 2008
- The future of glaucoma surgery
- The advanced technology and new surgical techniques discussed in this article appear promising as new surgical approaches; however, they are still being evaluated by glaucoma treatment professionals.
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.
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.
Related lenses on glaucoma
Support glaucoma research
Proceeds from the sale of these items will be donated to support research into glaucoma
powered by Zazzle.com
Your Feedback
Your comments are welcome
-
-
Keely
Apr 13, 2012 @ 11:34 am | delete
- 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.
-
-
-
Keely
Apr 13, 2012 @ 11:34 am | delete
- 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.
-
-
-
chelsea
Apr 5, 2012 @ 10:07 pm | delete
- 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
-
-
-
Nibbled
Jan 5, 2012 @ 12:16 am | delete
- 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
Jan 5, 2012 @ 11:36 pm | delete
- 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.
-
- Load More
by ashroc
I am an amateur photographer.
- 22 featured lenses
- Winner of 13 trophies!
- Top lens » Young people can get glaucoma too
Feeling creative?
Create a Lens!
Explore related pages
- How To Heal Open Wounds Faster How To Heal Open Wounds Faster
- What is a Colonoscopy & How Do I Prep For It? What is a Colonoscopy & How Do I Prep For It?
- My Visionaire Knee Replacement My Visionaire Knee Replacement
- Heart Surgery Scars | Prevention and Treatment Heart Surgery Scars | Prevention and Treatment
- My Breast Cancer Story Part 2 My Breast Cancer Story Part 2
- My Cataract Surgery and Recovery Experience My Cataract Surgery and Recovery Experience
