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Shared experience

I decided to focus on things I could do, rather than the things I couldn’t

Berni Warren shares her experience of living with type 1 and eye complications.

“I was diagnosed with type 1 diabetes in July 1996 while I was expecting my first child. Initially I was just put on a diet, but a couple of weeks later I was admitted to hospital. I’d developed a complication called diabetic ketoacidosis and was put on insulin.

Life with diabetes was a rollercoaster. But when I received my first insulin pump in 2011, I thought I’d get onto an even keel. However, because my average blood glucose levels, called HbA1c, dropped too quickly, I developed eye complications.

Losing my sight

I was diagnosed with diabetic macular oedema (DMO) in 2011. I started on intravitreal injections to try and save my sight. Unfortunately, the central vision in my left eye couldn’t be saved.

In 2012 I lost my job as a teacher and the following year permanently lost the ability to drive. In 2016, I was certified sight impaired. It was a really difficult time. I never thought losing my sight would happen to me and it was a shock when it did. I thought my sight issues would be temporary. I didn’t realise for me it would be lifelong.

Raising awareness

The reason I was given for the onset of my DMO was the rapid reduction in my HbA1c. Some people, including some healthcare professionals, aren’t aware of the risks of dropping it too quickly and how it can cause eye complications.

I know of others this has happened to and it is hoped that there will be proper guidance on how to do this safely in the future. But in the meantime, I spend time raising awareness of this with healthcare professionals and the whole diabetes community.

Living my life

Being sight impaired and managing diabetes can lead to a whole host of issues, from being unable to see how many carbs are on a food label, to using diabetes technology that has no accessibility options.

However, I decided to focus on things I could do, rather than the things I couldn’t. I looked for opportunities to educate others about diabetes and sight loss. I started to help at City University in London supporting the tutors with the low vision clinic. In year three, Optometry students have an opportunity to meet patients face to face and it is there that they learn the real impact of diabetic sight loss and how they can help patients after they qualify.

From there many other opportunities presented themselves. I’ve been involved with organisations including NICE and Moorfields Eye Hospital as a patient advisor, as well as speaking at events for patients and health care professionals.

Supporting others

In the last couple of years, I started reaching out to others affected by diabetes and sight loss as when I was first diagnosed, I didn’t know anyone else with DMO.

I became active with the Macular Society, a charity that supports those with central vision loss. I helped them start a DMO support group which meets monthly online and has an active WhatsApp group. We all help each other, especially on treatment days.

I’m passionate about advocating for those with diabetic sight loss and helping their voices to be heard. Whether it’s being part of committees, volunteering with charities or sharing what I’ve learnt; it’s an important part of my life.

I’ve found out things about myself since having type 1. I’m more resilient than I thought, and I’m not frightened to come forward if I feel something needs to change, especially in the diabetes world.”

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