Sight threatening retinopathy

[CreativeOwl]

DP (28) has just opened the post to find a letter saying he has sight threatening retinopathy.

He has has type 1 diabetes since the age of eight, and he never looked after it particularly well. However, I don't think he ever expected this to happen.

He has an appointment in 2 weeks, but I am terrified and thinking the worst. If he goes blind it will ruin his life, and mine. I am thinking way ahead but he wouldn't be able to work, and we just took on a mortgage I can't afford alone. I would become a carer and that's definitely not the life I want.

I guess what I am asking is does anyone know anything about this - is there a strong chance he will go blind? Is sight threatening retinopathy common/uncommon? Any advice or experiences with this would be appreciated.

What have they said exactly in the letter? Background retinopathy is incredibly common - more than 99% of people have some after 20 years with T1D. Have they said it is proliferative? Laser treatment for retinopathy is really good these days so hopefully this will help. Also, if he hasn't already done so he could use this as a prompt to ask for a libre, go on a Daphne course, be considered for a pump (if any of those would appeal to him). Finally, I believe that reducing hba1c too quickly can worsen the retinopathy so he should discuss gradually reducing the amount of time he spends high with his team.

I have diabetic eye retinopathy, I actually had laser treatment for it this morning! I have recently settled back in Englan after five years of sailing round the world with my husband.
You’re making a lot of assumptions, People with this condition rarely go blind in my experience, why would he have to give up work? I know many people who are blind, resulting from various conditions they certainly don’t considered their lives ruined and I don’t know anyone blind that has a carer, I have many blind friends as I have worked with visually impairment charities.
I have been diabetic for 25 years, had retinopathy for about 15 years. Does the letter say he has signs of retinopathy or that he needs treatment.

If you want any questions answering please give more info, such as what is the hospital appt for, Feel free to PM if you prefer

Agree with t1 about not reducing your sugars to quickly.

If he has background retinopathy then laser treatment can help (as pp have said), most importantly he needs to stabilise his bgs with help from his consultant and dsn. Is he on a pump? If not, it would be very wise to discuss this option.

Hi, I had laser eye treatment due accelerated retinopathy during pregnancy in 2016. Still have slightly leaking vessels but my sight it totally fine 2.5 years on (thanks to our amazing NHS). Anyone who is diabetic and pregnant might want to consider this group as s source of support...
www.facebook.com/groups/335316300425235/?ref=share

I had proliferative retinopathy which has been treated by laser and surgery. The laser worked for ages, but pregnancy and rampant hormones played havoc with my eyes, so I ended up having a vitrectomy in both eyes eventually.

Vitrectomy is where they remove the blood and cell structure left over from when you develop eyes in the womb from inside your eye and replace it with saline, over time the saline is replaced by your body. It's scary, a PITA as you have umpty million eye drops to take for varying lengths of time, rules about lifting/bending over etc post-op and so on, but my eyes have been stable now for 8 years or more, and I still meet the DVLA sight requirements for driving although I had a period pre-op where I gave up my license voluntarily.

Wow, what a scary time that must have been for you, but so brave of you to go ahead with that procedure, and even more amazing that it worked! Do you mind me asking how many pregnancies you’ve had? I’m considering a second pregnancy but am a little scared due to the retinopathy issues I experienced first time round

I've got 3 kids, they're 12/9/6 now :) I don't think brave is the right word though, if I hadn't had gone through with the op I'd likely be functionally blind now, as I had bleeds that weren't clearing on their own.

Vitrectomies were after the first and second pregnancies. Eyes were stable with the 3rd, thankfully.

@RueDeWakening I've had a very similar experience to you - never met anyone who's had the victrectomies in both eyes like us! Mine was caused by poor control at the time and have since had two kids which thankfully didn't cause any further problems.

It's all settled now but always have the fear that DVLA will take my licence away each renewal.
Do you have cataracts forming by any chance?

Yes, very minor so far though and 8 years on, it doesn't look like they're in a hurry to form :)

Just wanted to say thanks for sharing your stories ladies. I’ll be having a conversation next month with my eye specialist letting them know we’d love a second baby/pregnancy. If he strongly advises against it, this could be a bit of a blow. Have to see what the ol’ blood vessels are up to at the moment! The joys of diabetes 😏

Just read this with a bit of relief. DH type 1 for 41 years and functionally blind in his one eye had bleed in the other on Sunday. Laser booked to start tomorrow. Symptoms have improved but I was worrying about other issues. This is his 5 th or 6th lot of laser and he still drives. Just glad to hear the surgery work ok if we get to that point. Being a DP of a type 1 is tough sometimes OP but you get there try not to panic.