"I lost my job after my eyesight deteriorated, so focused on things I could do, rather than dwell on what I couldn’t."

Bernadette (Berni) Warren was diagnosed with type 1 diabetes in 1996 whilst expecting her first child.? Although she had worn glasses from a young age, she had never had any problems with her vision. In 2011 she was advised to make some changes to her diabetes treatment, and it was this sudden improvement in her diabetes management which caused problems with her eyesight. She is now registered as sight impaired and spends a great deal of her time helping healthcare professionals and students understand the impact of diabetes and sight loss.

“In 2011 my diabetes team decided that it would be a good idea for me to change to pump therapy and my sugar levels quickly became the best they had ever been.? This was great news but unfortunately after a couple of months I couldn’t see as well as I had before, and it led to me attending my opticians. I thought I needed reading glasses, but I was to find out that the problem was far more complicated than that and I needed to go the hospital. It came as a great shock when I was diagnosed with Diabetic Macular Oedema (DMO) and I had to start anti-VEGF injections straight away.

Unfortunately, my eyesight continued to deteriorate and the following year I lost not only my job as a teacher but soon after I also lost the ability to drive. By now I had two teenage children, and my husband became the designated driver for all trips we made. Without a job I did not know what I was going to do as I was far away from retirement age so I started to focus on things that I could do rather than dwell on what I couldn’t.

I started volunteering in a variety of settings to help healthcare professionals and students understand the impact of diabetes and sight loss. I also joined some committees for organisations such as NICE and the Royal College of Ophthalmologists. I really enjoy advocacy work and I still volunteer for these committees even though my sight is worse now as I also have cataracts, glaucoma and diplopia as well as DMO.

Sight loss has been a difficult journey and there have been many losses along the way. I have had to be brave on many occasions whether that be when having treatment or receiving unwanted news. However, I have a strong faith and being a Christian has really helped me to remain positive.

Quite early on in my sight loss journey I started to learn braille. I was attending a braille class every week and really enjoyed reading with others. Unfortunately, when COVID restrictions came into place the classes stopped, so I looked around for an online braille reading group. I did a lot of research and couldn’t find any so in September 2020, along with the Braillists Foundation, I started a braille book club, meeting weekly on Zoom.

The book club’s popularity soon grew and instead of just one reading room (breakout rooms) we expanded to incorporate different levels of braille readers from beginners to advanced readers. We now have 5 different reading rooms where each room is reading a different book (mostly children’s books). Quite quickly we had readers join from other European countries and the USA too. In each room we take it in turns to read from our books and of course have a good laugh along the way. Braille has become an important part of my life. Recently Lego have bought out some braille bricks which are the same size as a regular brick but have braille on them. These are a fantastic way to learn grade 1 braille and my braille class has bought a set so that the adults who are learning braille can use these to help them. This year is a special year for braille as between September 2024 to July 2025 we will be celebrating 200 years since it was invented.”

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We would like to thank Berni for sharing her story with us for this edition of the Bolder newsletter, and for her participation in the co-development of the RNIB Adult Low Vision Service Quality Framework and Good Practice Guidelines.

This was a sneak peek from Bolder, our newsletter for #LowVision Practitioners. Sign up for future editions here rnib.in/SignUpToBolder