Coping with a glaucoma diagnosis

Posted: 15/02/2019 | Scottish War Blinded

A glaucoma diagnosis can feel like a very worrying time for both the person affected and their family.

If you are on the receiving end of such news, it naturally raises a whole host of questions and emotions surrounding how to cope, and what the future will hold.

But there is help out there, and with the right advice and by taking things a step at a time, there is no reason why a glaucoma diagnosis should stop you leading a full, exciting life.

 

Expert advice

Katrina Campbell is a Rehabilitation Officer at sight loss charity Scottish War Blinded.

With 17 years’ experience of working with people with vision impairments, including training and eight years working with Guide Dogs, contract rehab worker roles in Dumfries and Galloway, Glasgow and Falkirk before joining Scottish War Blinded, Katrina has been based at Scottish War Blinded’s Hawkhead Centre in Paisley since its opening in October 2017.

She works closely with veterans with sight loss due to a wide range of conditions, including glaucoma, on a daily basis. She carries out one-to-one assessments and applies her expertise in order to ensure each individual receives the most suitable equipment, training, support and advice from Scottish War Blinded, enabling them to live as independently as possible with their eye condition.

Here, Katrina answers some common questions she often encounters as she assesses and supports people who are living with a glaucoma diagnosis:     

Rehabilitation Officer Katrina Campbell sits smiling at her desk

 

What is glaucoma?

Glaucoma is a common eye condition, which is generally caused by a build-up of pressure in the eye due to the fluid being unable to drain properly. This increase in pressure then damages the optic nerve that which sends the images from the eye to the brain.

It affects the edges of your vision (peripheral vision) first, thus it is often only picked up during a routine eye test.

There are several different types of glaucoma, the most common primary open angle glaucoma is painless and is caused by the drainage channels in the eye becoming gradually clogged over time.  Acute angle closure glaucoma is less common and can be very painful, it is caused by the drainage in the eye becoming suddenly blocked raising the pressure inside the eye very quickly.  Congenital glaucoma is a rare condition that can affects young babies, it is usually diagnosed in early years and managed by specialist clinics.

It is not always clear why some people develop glaucoma.  Certain factors can increase the risk such as your age as (glaucoma becomes more common as you get older), your ethnicity (people of African, Caribbean or Asian origin are at a higher risk), genetics (you are more likely to develop glaucoma if you have a parent or sibling with the condition), your prescription (short-sighted or long-sighted), or other health issues.

Katrina demonstrates specialist equipment to a Scottish War Blinded member

 

How do I cope with my glaucoma diagnosis?

The damage caused by glaucoma cannot be reversed, however it is possible to stop or slow the progression of disease with medication, laser treatment, or surgery. 

Many people with glaucoma do not have sight loss, as their treatment prevents it. However sometimes, for different reasons, vision can deteriorate. 

If this happens, hopefully, the eye clinic will signpost patients to the numerous organisations that can advise and assist, such as their local sensory social work team, the International Glaucoma Association (IGA), Scottish War Blinded or Royal Blind, where practical information and support is available.

 

Will glaucoma make me lose my sight completely?

Most people are able to retain good vision with treatment.  Depending on the type of glaucoma they have, this could be a one-off treatment, such as surgery, or controlling their glaucoma by taking their medication correctly, regularly and keeping appointments with their ophthalmology consultant.

Sometimes treatment is unable to stop the deterioration, however it can still significantly slow the damage that occurs. Even in the worst case scenarios most people retain a degree of useful vision, such as light perception.

 

How often should I get an eye test if I have glaucoma?

Glaucoma is the reason why we should all attend an optician for an eye examination at least every two years. The condition has been called the ‘silent thief of sight’ due to the fact it tends to develop slowly over many years.

As the condition affects the edges of your vision (peripheral vision) first, it is often only picked up during a routine eye test.

Everyone should have an eye test at least every two years, and anyone with high risk factors (for example, a close relative with glaucoma) should be tested every year. 

Contact your optician immediately if you notice any change or deterioration in your vision.

Katrina demonstrates a CCTV reader to a Scottish War Blinded member

 

Why is it important to stick to my treatment?

At this time, there is no treatment to reverse loss of vision that has already occurred due to glaucoma, but it can help stop your vision getting any worse, which is why it is very important to stick with your treatment.

Eye drops are the main treatment prescribed for glaucoma. There are several different types of drops that can be used, which ultimately all work by reducing the pressure in your eyes.

You may need to try several types of drops before you find the one that works best for you.  Sometimes you may need to use more than one type at a time. Eye drops are normally used between one and four times a day.

Occasionally the eye drops can cause unpleasant side effects, such as eye irritation, and some are not suitable for people with certain underlying conditions.  It is important to use them as directed, even if you have not noticed any problems with your vision. Your sight is at risk if you do not stick to the recommended treatment.

 

What should I do if I feel my prescribed medication is not working for me?

Contact your ophthalmology department and discuss any concerns or issues with your ophthalmology consultant or ophthalmic nurse.  Do not stop taking your glaucoma medication until you have been advised to so as the medication controls the eye pressure and prevents further irreversible damage. 

 

How can I help my relative with glaucoma?

It is completely natural to be upset and worry when someone you care about has been diagnosed with glaucoma. However, with treatment most people can control their condition, which means life continues as normal.

Generally, glaucoma results in the loss of peripheral (side vision) but the central vision which is responsible for the clearest vision remains good.  This can confuse family and friends as it means a relative with glaucoma can possibly continue to read small print but will fall over something big like coffee table which is in their peripheral vision.

If vision is affected it is advisable to gain an understanding of how it affects your family member or friend’s vision. Do not be afraid to talk to them about their glaucoma and ask what they can see.

Understanding how glaucoma can affect vision means family and friends can support with issues such as mobility.  Occasionally, sight loss can slowly progress so that the field of vision becomes very narrow and it can appear as if looking through a tunnel, finally resulting in central vision possibly being affected too and causing blind spots to appear when looking straight ahead.

Having an awareness that glaucoma generally affects peripheral vision, can include loss of contrast sensitivity (the ability to see shades of the same colour), can result in problems with glare, light sensitivity and finally reduced visual acuity (the ability to see fine details) makes it easier to understand what they are experiencing.

Relatives can also help by ensuring the family member affected is put in contact with supporting organisations, such as Scottish War Blinded or Royal Blind.

 

Can I still live independently with glaucoma?

There is no reason why someone with glaucoma cannot continue to lead a full and active life with the correct aids and training. 

At Scottish War Blinded, we have a team of rehabilitation officers who will work with you to identify the best aids and provide training to enable you to be independently in every aspect of your lives. 

 

What kinds of things will help me complete daily tasks?

Depending on the severity of the glaucoma most people can continue to read, cook, etc., however some tasks such as popping out to the shops or getting to work can be more challenging due to the loss of peripheral vision. You may miss obstacles at your feet or bump into lamp post or other people in the street, which can feel embarrassing.

Sometimes a symbol cane (a small, folding white cane to let other people know that you have a visual impairment) is enough.  It can be carried in a bag or pocket and pulled out when required to make people aware of your difficulties. 

Alternately, a guide cane is longer and thicker than a symbol cane, making it more visible to others.  It is used for basic protection. They generally extend from the floor to the user's waist and can be used to scan for kerbs and steps, as well as diagonally across the body for protection, warning the user of obstacles immediately ahead.

A long cane can be used to test and provide information about the environment around the user. The long cane is the best-known style of white cane. It is used by sweeping it across the area in front of you and so can provide you a great deal of information on the terrain ahead as well as warning of obstacles in front of you. This cane combines the advantages of the symbol and guide canes with the maximum aid to mobility.

Your rehabilitation officer will work with you to identify your issues and needs and provide the correct type of cane and training, as well as items such as anti-glare glasses.

 

How can Scottish War Blinded help?

If you are experiencing sight loss and you are also a veteran, you may be eligible for support from Scottish War Blinded. Call 0800 035 6409 to refer a veteran to the charity.

If you are not a veteran, Royal Blind provides a number or services helping people living with sight loss.