What is retinopathy?

Retinopathy is one of the most common diabetes complications, but do you know the facts? We asked Retina SA to explain what retinopathy is and how to spot the first symptoms.

What is retinopathy?

“To understand retinopathy, we need to know what the retina is,” explained the team at Retina SA. The retina lines the back of the eye. It is a very sensitive membrane that receives the light that enters into the eye, much as a camera receives the light when a photograph is taken. The light is then converted into electrical signals that travel along the optic nerve to centres in the brain where the signals are interpreted as a picture of what is seen.

Retinopathy describes a disease of the retina. There are many different types of retinopathy and all of them involve the small blood vessels that nourish the retina. When these tiny blood vessels are damaged, the retina is damaged at the same time, and vision is affected.

Retina SA

Who is at risk of retinopathy?

One of the major causes of retinopathy today is diabetes. Because diabetes has become a global problem, more and more people worldwide and in our own country are at risk for visual problems and even blindness.  Interestingly, damage to the retina often shows up years before diabetes is diagnosed. This can only be detected by a retinal screening, done at your diabetes clinic or by an ophthalmologist (eye specialist) or an optometrist who examines the retina.

What are the first symptoms of retinopathy?

It is almost impossible for people to detect the early stages of retinopathy themselves. This is why an annual visit to an ophthalmologist or optometrist or a retinal screening to examine the back of the eye is essential. 

Retina SA

The part of the eye that we use to focus is the macular at the centre of the retina. The surrounding areas – the periphery – are responsible for the vision that we see at the side, known as peripheral vision. The damage from diabetic retinopathy begins in the periphery of the eye.

Because these areas are not in full focus, we usually don’t realise that there are areas that are blurred or even distorted. It is only when the damage is quite advanced that the individual becomes aware that their vision is impacted.

What are the outcomes of retinopathy?

Diabetic retinopathy is divided into four stages. These are classified as: mild, moderate,  non-proliferative, and proliferative.

The treatment of retinopathy will depend on the ophthalmologist. These days, we have anti-VEGF injections that may be injected into the affected eye to preserve vision. It is important to note that different people respond differently to different product, so this is just a guideline.

At all stages of retinopathy, a healthy lifestyle is very important. We recommend enjoying a meal plan that includes all the colours of our South African flag every day! In addition, physical movement is essential – so keep dancing and moving or even waving your arms around. (Here are some fun fitness ideas.)

Smoking is a big no-no and alcohol consumption should be guided by your medical team.

How can people with diabetes prevent retinopathy?

There are two essential steps for people to take to prevent retinopathy.

1. Get a retinal screening every year – either at your clinic or from an ophthalmologist or an optometrist who examines the retina.
   This should start on diagnosis for people with Type 2 diabetes and at least 10 years after diagnosis for people with Type 1 diabetes.
   
2. Manage your diabetes as well as you can.
   This includes regular checking of blood glucose, keeping hypertension (high blood pressure) and cholesterol controlled, eating well and keeping active. (Remember TEEL!)

How can people with diabetes get support if they’re experiencing vision loss or have already been diagnosed with retinopathy?

By registering with Retina South Africa, people have access to all their services, including education, advocacy, counselling, appropriate referrals and research updates.

To help us understand retinopathy better, we asked one of our community members, Gavin van Wyk, to share his experience – he is also a patient advocate of Retina SA.

How did you find out you had retinopathy?

It was about a week after my lower right foot amputation. I woke up with a dark spot in my field of vision and a severe headache – I assumed it was a migraine as it was just on one side of my face. I treated it as a migraine for 3 days and then realised it wasn’t. I asked my wife to take me to my optometrist and he recommended I see an ophthalmologist right away.

I went to our local one in Welkom, but he said the bleeding was too close to my retina and referred me to one in Bloemfontein. Luckily, Dr. Gouws acted quickly and I went for an operation where he stitched my retina in place and filled my eye with silicone oil, after lasering the burst blood vessels. It was about a year later and the exact same thing happened to my other eye, due to diabetes complications.

What do you wish you’d known before you were diagnosed with retinopathy?

Look, as a person living with diabetes since the age of 3, we all know they say, “look after yourself, your eyes, kidneys etc.” I wish my healthcare team throughout my teenage years had explained the importance of having a good HbA1C and what that meant. In my 20s, my doctor always said with my HbA1C being 11% and higher that it’s not ideal, but it’s okay.  Just to be clear, it WAS NOT okay and all my complications could have been avoided. In that stage of my life, I was living with diabetes burnout for years and they just kept prescribing more medications.

I was dealing with a depressive episode due to the amputation and all of a sudden I was on the brink of going blind! That was a massive ordeal for me, realizing I might wake up and not be able to see my wife’s face again. That’s when, with the support of my wife, we started working earnestly to become healthier.

Complications do happen, but you have a measure of control to slow it down and live a healthy life. Diabetes burnout does still happen, but now I know how to cope with it and my support systems are in place.

Gavin van Wyk

What advice would you offer to other people with diabetes and vision loss?

Simply put, you are not alone!

There are wonderful organisations and people out there who understand and are able to help. Be wise about your own health and take steps to know and understand the  symptoms and treatments. Educate yourself, speak up, ask for help.

Diabetes and vision loss gives you good and bad days: emotionally, physically and spiritually. Don’t just pay attention to one, but keep the balance between body, soul and spirit, meaning medication, mental health and your faith.

Gavin van Wyk

Also please go and see your optometrist and eye specialist at least once a year to pick up the symptoms early through screening!

Who is Retina SA?

Retina South Africa is a non-profit organisation offering assistance to all people in South Africa who suffer from retinal disease.

How can they help people with diabetes?

Retina SA offers counselling, support, education, and referral to their network of professionals throughout South Africa.They are affiliated to both international and local research institutions and all regional research in South Africa is facilitated through Retina SA. This means that people on their database will be eligible  for all retinal research in our country

How can our community get in touch with Retina SA?

Email: headoffice@retinasa.org.za
Contact: 0860595959
Website: www.retinasa.org.za

Follow Gavin van Wyk’s diabetes journey on Instagram @gavvw22

What to read next?

Free Diabetic Retinopathy Risk Calculator: We just found out about the Retina Risk App, developed in Reykjavik, Iceland, and wanted to share it with our community of South Africans with diabetes.

New Discovery screening benefit helps you take care of your sight: If you’re living with diabetes, it’s important to have your eyes screened every year. The new diabetic retinopathy screening benefit from Discovery hopes to make this a lot easier.

We did it! How to claim the Discovery CGM Benefit:A step-by-step guide to claiming the new CGM Benefit.

Photo by Chris Curry, Soweto Graphics on Unsplash