Proliferative diabetic retinopathy at 36 in the UK
I'm looking for some advice, thoughts, or words from others who have proliferative diabetic retinopathy.
I'm 36, T1 since 12, and last March during a routine screening I was told I had excessive blood vessel growth in my eye and signs of diabetic retinopathy.
Since then, I've had 7 Avastin injections and a round of laser treatment in both eyes. I've just had 2 months off the injections, as the consultant suggested I could have a rest and “see” if they had it under control. Turns out, at the check-up last week after fluorescein angiography, one of my eyes is lit up like London from space and it's “very aggressive” according to the consultant.
He said that I'm now almost 100% likely to lose my driving licence, as the next round of laser is going to destroy my peripheral vision completely in at least one eye.
I feel like a ship without a rudder.
I have my husband and family supporting me, and they're helping in whatever way possible, including booking a second opinion privately at Moorfields in London. But in reality… am I going to be legally blind at 36?!
I've managed my T1 really well since having kids 13 years ago, keeping my HbA1c between 48–55.
The consultant (Dr Baddon) pretty much just said, “Tough luck, genetics are against you,” and that the plan is to keep me able to see faces for as long as possible and hope that AI will help with day-to-day tasks in the future.
Honestly, I lack hope right now.
Has anyone got any advice/name of people i can speak to, any treatments anywhere i could have, other than what i am having?