Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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If you have T1D, have you been diagnosed with retinopathy? Cancel reply
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In 1975, 25 years in. First laser treatment. Still driving, though I do have nyctalopia. (❛‿❛✿̶̥̥)
Yes in 1981 – 19 years in since being diagnosed at age 8 in 1962. It was early prolific, just beyond background stage retinopathy and because I was in a diabetes research study arm of the DCCT and wanted to get pregnant, the endocrine team overseeing my treatment recommended I have both eyes treated. Had laser treatments in both eyes over a period of a year (1981-82) and my eyes have been quiet w/o any new retinopathy developments ever since. I have also managed to keep my A1Cs in the 7.5 to 6.5 range for years.
Yes after 25 years or so of thinking that stuff only happened to those “other people”. Get your sugars under control and keep it under control, or it will most likely happen to you too. An A1c of 7 is not under control!
LADA 21 years in and my specialist says no damage from T1D. There are SOME victories we can claim!!
I was diagnosed with neuropathy in 2007, 62 years after my diagnosis. I started using a pump several months after that diagnosis. My retinopathy disappeared after having so much better control with the pump. I have not had retinopathy since that time.
Retinopathy was the first of a number of diabetes-related complications that I’ve developed, and that was more than 30 years ago.
That was my first signs of complications in 1977. Had proliferative retinopathy with numerous laser surgery treatments. That saved my sight for many more years.
I don’t remember exactly when, I’m guessing the early 1990’s, an optometrist told me I had retinopathy. In subsequent visits, I was told that it was gone. A few years later another ophthalmologist told me that I had tearing, or weakening on my retina. He did lazer surgery in his office. I never heard anything after that. Otherwise, my ophthalmologists tell me my eyes look good, and I am doing a great job.
So far, my eye doctor says my eyes don’t know I have diabetes.
Surprisingly since A1c always was under 6. I am a LADA. A few spots. Stable. I am slim and BP on the low side and now they say slight heart failure. Darn diabetes.
So sorry! But don’t blame yourself. Diabetes is wierd that way- you can spend a lifetime working att it and then poof! Something else pops up. I say F***ing diabetes!
Only in one eye after being TD1 for 59 years. Total surprise to me and endo.
I have had cataract surgery some years ago — not sure if that protects me from retinopathy.
Never diagnosed with retinopathy, but had one Ophthalmologist visit where after the Dilated Eye Exam, he said that I had no detectable retinopathy, but I did have several drops of blood floating in the fluid within my eyes, but he couldn’t see any visible source of the blood drops so he said it was most likely harmless byt he’d check again the following year.
The following year, he again said my eyes looked good, and despite having seen blood drops floating inside my eyes at last visit, by the next visit he could see nothing in my eyes other than slight cataracts in both eyes, but neither eye had cataracts bad enough to be worth considering more than just being aware that the cataracts are there and watching for worsening.
Not so far, but cataracts have been dx’d with treatment forecast for my future. Prescriptions have varied with blood sugar levels.
Diagnosis of retinopathy 22 years post diabetes onset. Multiple laser surgeries and one vitrectomy. Vision is 20/40. Lenses are for reading only. Early diagnosis and timely treatment prevent vision loss. 47 years and counting.
No, but I have a wrinkle in my right retina and a small wrinkle is forming in the left.
Dr. Just diagnosed something similar to macular degeneration- can’t remember the exact name. I wrote it down but lost the piece of paper. Seventy two today, 60 years with T1d. Still alive and kicking up a storm! ( can see well enough to read this!) Happy F***ing Birthday to me!!!
HAPPY BIRTHDAY 🎈
Happy Birthday!
I was diagnosed with Lattice Retinitus over 35 years ago. This is a congenital problem in about 5% of the population. However, I had a retinal tear 12 years ago that was repaired with laser surgery and cataracts that caused both lenses to need replacement ten years ago. My eyes have been ok since then. Glasses fix everything except being a LADA for 35 years.
No nephropathy, not yet … But I have the onset of Glaucoma. Taking eye drops for 3 mo now. Have an eye Dr visit in a couple of weeks to see if it has progressed.
I was diagnosed with mild retinopathy, micro aneurisms, which have remained fairly constant over the past 35 years. No visual impact and no treatment required.
Diagnosed with T1 in 1960; diagnosed with retinopathy in 1992; lasered in 1992; retinal “peel” in 2019. Vision isn’t perfect but it’s good enough.
Yes, and because I have retinopathy I also have DME as a side effect. I now have to have injections of Eyela in both eyes every 4 weeks to keep the edema in check.
Dx at circa yr 35 T1 1989. One vessel lasered. No more until 2002.
The only good thing about my extreme myopia is that it protect’s me from diabetic retinopathy, which is fine with me. I’ve already had had 2 retinal detachment’s in my right eye and on the follow up for my second had I had another one just starting.
I’m just thankful for the little vision I have left in my right eye, due to the wonderful Dr. Gilbert Grand.
Dx’d with retinopathy in the late 80’s. Found it early because I initially went in for macular edema Had multiple laser in both eyes.
Yes, in 1982, 27 yrs. after T1D dx. Over the next 5 years had 5 laser surgeries in my left eye=legally blind in that eye. Right eye has been stable without laser treatment.
I was diagnosed with retinopathy 25 years ago, I Was treated with more laser bursts than I can remember and it has been stable since. I did lose significant peripheral vision.
Type one 1961, retinopathy 1978.
It started after 40 years of being a T1D, it started in only 1 eye – After, literally, 1000’s of laser blasts – they finally put up the white flag, and scheduled me for surgery. Since then – no issues. Knock on wood, the other eye continues to remain retinopathy free!
yes, diagnosed T1, 1983, Retinopathy 2012.
YES, diagnosed with retinopathy in 1966 and told, as at that time there wasn’t any treatment other than removal of pituitary gland that I’d be totally blind within two years. I wanted another opinion, and found Dr. Lloyd M. Aiello who confirmed the diagnosis and told me about a theory he wanted to try that MAY provide help.
I volunteered and had my first, of many, LASER treatments in 1967. The rest is history and still see well. I was blessed by being in the right place at that time.
T1D 1953 at age 21.. Cataract surgery about age 75… started AMD age 85…. NO retinopathy so far …
No. Type 1 for 34 years. Just had my last eye exam in October and everything looks good.
No. Over 46 yrs with T1d with no retinopathy. Facing cataract surgery soon, though.
Diagnosed with mild nonproliferative diabetic retinopathy, no macular edema, last year. This regular exam at the University Hospital. Even if it progresses there are treatments. It’s nice to see how medicine has improved in the last century and hopefully continues to do so.
Almost 62 years if t1 d and no retinopathy. Did have cataract surgery at age 45 though. Best thing I ever did because till then I was severely nearsighted! I’ve had 20/30 since then!
Diagnosed with diabetes 1961. Diagnosed with retinopathy 1971. I was attending the University of California medical school in San Francisco as a student and was very lucky that they had all the modern laser equipment. Had my eyes treated 4 times over one year and everything stable except for some color blindness, low light blindness and some peripheral vision loss. Eyes appeared to be stable according to my twice a year visits with the ophthalmologist. Doctors could not detect any disease stage in my eyes but vision slowly seem to get worse and when in 2003 they did a visual field test I had less than 10% field of vision remaining. They really could never figure out exactly what happened other than perhaps some undetectable background retinopathy or some other type of disease. I have no other complications from my diabetes and was diagnosed noW for 60 years.
I was dx’d as a Type 1 in 1976 while in my late 20’s. Before 1990, I was told by my ophthalmologist that I had the beginning signs of retinopathy but nothing requiring any treatment. That was my wake-up call to learn more about how to better manage my glucose levels. (My family also has a history of macular degeneration and I greatly fear losing my eyesight. I may still go blind but it won’t be because I didn’t do everything I could to prevent it.) After reading Dr Richard Bernstein’s “Diabetes Solution” I immediately undertook to become “carboydrate-aware” and reduce the amount of daily carbs in my diet. By following a lower-carb diet, I have been able to manage my diabetes and prevent my retinopathy from progressing to the point where I need any treatment…..so far. I was also able to prevent the neuropathy in my feet from getting worse and actually saw a reversal of those symptoms. I have been using an insulin pump since 2011 and a CGM since 2019. Prior to that I was on MDI. Lifestyle changes made early enough in my journey with diabetes has given me a good quality of life into my retirement.
No, Thank God! I only have one good eye (due to birth defect NOT T1D)
Yes. Diabetic since July 2000, retinopathy treatment started about 5 years ago. Years of mismanagement in my teens, but my retina doctor said even if I had been perfect, some of us are just predisposed to retinopathy. Current A1c 5.9% and ~85% TIR. Proliferative diabetic retinopathy and presented with diabetic macular edema which has since subsided. Injections in both eyes every 4 weeks for years as well as panretinal photocoagulation (laser). Eventually the bleeding into the vitreous got so bad that I had two vitrectomies within the last 6 months because I was having hemorrhages so large that I’d be partially or fully blind (usually one eye at a time) and had to go out on short term disability.