Young people can get glaucoma too

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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 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.

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 they 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.

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 havent 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 :)

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.
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.
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.

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

Personal stories of other young people with glaucoma 

Living with glaucoma
personal stories from other young glaucomates
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

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

Khamla Thipphasang, aged 34 

Vientiane, Laos

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

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.

Ashroc (aka Jenny Wood) 

Delayed birthday party

This is a photo of me, ashroc (aka Jenny). We had my delayed birthday party in May of 1994, as i had my birthday in February in hospital. It took a while after all the operations to feel like celebrating.

Organisations providing information for patients and their families on glaucoma 

Glaucoma Australia
Information for patients and their families on glaucoma
International Glaucoma Association
The IGA is a registered charity which offers advice and support to glaucoma sufferers and aims to increase public awareness of glaucoma. They also fund clinical research into the nature and treatment of 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.

Videos from YouTube 

Glaucoma

A consultant ophthalmologist explains what glaucoma is, how it can affect your vision and how it can be treated.

Runtime: 247
22165 views
22 Comments:

curated content from YouTube

What is Glaucoma? 

An easy to understand explanation of what glaucoma is and how it affects the eyes
powered by Youtube

What is glaucoma? 

Glaucoma is a disease that affects the optic nerve and involves loss of retinal ganglion cells in a characteristic pattern. There are many different sub-types of glaucoma but they can all be considered as a type of optic neuropathy. Raised intraocular pressure is a significant risk factor for developing glaucoma (above ). One person may develop nerve damage at a relatively low pressure, while another person may have high eye pressure for years and yet never develop damage. Untreated glaucoma leads to permanent damage of the optic nerve and resultant visual field loss, which can progress to blindness.

Glaucoma can be divided roughly into two main categories, "open angle" and "closed angle" glaucoma. Closed angle glaucoma can appear suddenly and is often painful; visual loss can progress quickly but the discomfort often leads patients to seek medical attention before permanent damage occurs. Open angle, chronic glaucoma tends to progress more slowly and the patient may not notice that they have lost vision until the disease has progressed significantly.

Glaucoma has been nicknamed the "sneak thief of sight" because the loss of vision normally occurs gradually over a long period of time and is often only recognized when the disease is quite advanced. Once lost, this damaged visual field can never be recovered. Worldwide, it is the second leading cause of blindness."Global data on visual impairment in the year 2002" Bulletin of the World Health Organization Volume 82, Number 11, November 2004, 811-890 Glaucoma affects 1 in 200 people aged fifty and younger, and 1 in 10 over the age of eighty. If the condition is detected early enough it is possible to arrest the development or slow the progression with medical and surgical means.

Famous people with juvenile glaucoma 

The following people have either congenital glaucoma (they were born with it) or juvenile glaucoma (developed glaucoma as children)

Whats your experience? 

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  • Reply
    blue22d blue22d Oct 5, 2009 @ 11:55 am
    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.
  • Reply
    ashroc ashroc Sep 15, 2009 @ 3:59 am
    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.
  • Reply
    Adriana Adriana Sep 15, 2009 @ 12:53 am
    Today, my 18 y/o son was diagnosed with border line glaucoma. He is on drops since today. I'm quite dissapointed 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.
  • Reply
    ashroc ashroc Jun 15, 2009 @ 4:16 pm | 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.
  • Reply
    GlaucomatousJuvenile GlaucomatousJuvenile Jun 15, 2009 @ 12:38 pm
    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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by ashroc

I am an amateur photographer, and I am learning to paint and draw in the evenings (more)

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