The Observatory

Living with diabetes: a personal reflection

By the time you’ve finished reading this another Australian will have developed diabetes. That’s the going rate today: one Australian every five minutes.
Helping one person might not change the world, but it could change the world for one person. 
These were the words that shifted and redefined my purpose. Because you see, living with diabetes is a life-long challenge, with no ‘off’ switch, because there are NO off days. Steer away for 24 hours and you find yourself in hospital. I still remember vividly vowing to one day tell the world all about the unspoken truths of diabetes. 
On the 15th of October 2018 I had the privilege to be among a select group to witness and speak at the official launch of KeepSight at Parliament House in Canberra. As I listened to the Minister for Health, the Hon Greg Hunt MP, describe KeepSight as a once-in-a-generation opportunity and saw the Parliamentary Friends of Diabetes and Parliamentary Friends of Eye Health and Vision Care MP’s support for the initiative, an overwhelming rush of emotions came over me. 
As someone who has lived with type 1 diabetes for over 25 years, married and caring for my partner who also has type 1 diabetes and working as a clinical optometrist with a special interest in type 1 diabetes, this moment moved me in a way I cannot describe in words. 
Losing vision to diabetes is my ultimate fear. Out of all senses, vision plays the biggest role in my life. I can’t fathom what life would be like if I couldn’t see my two beautiful boys growing up before me. My eldest aspiring to be the next cardiac surgeon who wants to find a cure for congenital heart disease whilst pledging to be the next Tim Cahill, while the little one wants  to be a paediatric oncologist promising he would find a cure whilst he pledges he will be the next Usain Bolt. My biggest fear is not witnessing them pave their own futures and build their own dreams. 
As a clinical optometrist with a special interest in diabetes and diabetes-related eye disease, I can tell you – diabetes does not discriminate. While managing others with diabetes-related eye disease I have seen first-hand how this has significantly affected people’s lives. Some have had to leave their jobs, some have needed full-time carers and some have had to hold onto memories as they can no longer visually see their loved ones. 
Only last week, I witnessed the heartbreak of my patient cutting up his own driver’s license as he was informed he could no longer drive due to advanced diabetes-related eye disease. He was a traveller, always on the road and ready for the next adventure. Sightseeing was his thing. It was his breath of air. I learnt very quickly that diabetes and diabetes-related eye diseases affected people in so many more ways than I could ever imagine.
‘If I knew then what I know now’ has become one of the most common phrases that I hear all too often from patients experiencing diabetes-related eye disease. The voice of deep regret, hurt and disappointment that if only something had been done differently, if only someone had taken the extra step to remind them, maybe things would have turned out differently. 
Our eyes are one of the most loyal organs in the body, they will preserve our vision as long as possible. Not giving us the slightest clue that something is going on, until it’s unfortunately too late.
Almost everyone with type 1 diabetes and more than 60% with type 2 diabetes will develop some form of diabetic retinopathy within 20 years of diagnosis. 
Projections reveal by the year 2030, 552 million people worldwide will be living with diabetes. Currently in Australia we have 1.7 million people with diabetes and out of those, one in three will develop diabetes-related eye disease.
The fact is, diabetic retinopathy is the leading cause of preventable blindness among working adults in the world. The word we need to focus on is ‘preventable’ – we CAN do something about it. 
It’s been a long time coming but we are here today making a change in the right direction. KeepSight is all about making it easier for people with diabetes to get their eyes checked. 
For some people delaying or even skipping regular eye checks may seem insignificant.
But months can turn into years, and unfortunately by the time they come in to see me they are already experiencing diabetes-related eye complications – sometimes it’s just too late. The earlier these complications are detected the more likely it is that they can be managed and treated successfully. 
We need to remember that diabetes is complex and impacts on EVERY aspect of people’s lives, making it at times very overwhelming to manage all of their appointments. As both a health professional and patient I can be the first to say this is often why many of us fall through the cracks of the health system. Life just happens…
In some cases people don’t understand the link between diabetes and eye disease or that vision and eye health are often two separate entities.
KeepSight is about making it easier for people to remember to get their eyes checked within recommended time frames by building a structure for systematic eye examinations. That means that not only will the person with diabetes see their optometrist or ophthalmologist, but once they are registered with KeepSight they will be given a reminder, either by letter, SMS or social media, to book in their next appointment
It is not just about getting people with diabetes to get their eyes checked once, it is about making this a part of their lives and taking one more load off their already hectic schedule. Making diabetes management easier for people is something people with diabetes have been needing and wanting.
As an eye care practitioner, I’m excited about KeepSight. I’m passionate about saving people’s eyesight and this is a passion shared by Australia’s optometrists, ophthalmologists and orthoptists. 
We are ready and waiting to check the eyes of the 630,000 people with diabetes who aren’t getting their eyes checked and to play our role in ending diabetes-related blindness within a generation. 
If we can change the world for one person at a time, then we WILL make a difference. 
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About the Author

Amira Howari

Amira Howari is a senior clinical optometrist, industry speaker and is an ambassador for Diabetes Australia. Amira regularly speaks on public and industry platforms and freelance writes for industry publications. Having lived with type one diabetes for over 24 years, co-managed with ophthalmologists endocrinologists and diabetic nutritionists/educators- her passion in this area has seen Amira venture into educational and proactive roles with a number of institutions, health magazines, radio and public conferences as a Diabetes Australia ambassador. Amira Howari has worked extensively in corporate and independent optometry practices and in pharmaceutical settings. Amira has also worked at The University of New South Wales as a Clinical Supervisor and guest speaker.View author's posts
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