Reti-No-Pity; I rolled my eyes so much, my brain hurt
One of the things I consider responsible, is the ability to act proactively and positively on the basis of knowledge. Many doctors and clinicians would know about diabetic retinopathy really well.
Many members of the general public would. But they may not have ever heard of sickle retinopathy.
People would generally get what you are talking about when you mention sickle retinopathy because of the known association with diabetes and vision.
1 in 10 people are diabetic. See? There is power in numbers.
Majority of your Type 1s will be screened regularly for diabetic retinopathy.
The last consultant who saw me told me if I was diabetic, they would be genuinely worried about my diagnosis. The fact that there is a risk that vessels in the eyes could burst and lead to hemorrhage causing sudden loss of sight is scary. Fortunately, this isn't always the case in sickle. It's very rare for a burst and vessels will tend to scar off.
The first time retina haemorrhage was ever associated with sickle was in the 1930s. However, it wasn't until the late 1940s that scientists and clinicians were able to understand the underlying mechanism of sickle retinopathy as it was later identified that the occlusion of small vessels which were caused by the sickling process resulted in changes/ damages in the retina.
Ha, the 'eureka' moment.
My diagnosis is non-proliferative sickle retinopathy.
Every year I ensure I get an annual eye check on the high street to ensure my vision is fine and there are no major risk factors. It's the responsible thing to do right?
The silly and unsettling thing about checks is that 9 out of 10 times, there is likely to be a finding that you are not looking forward to but early diagnosis is a powerful thing when you have a complicated disorder such as sickle cell. It's a life saver.
The eyes; one of the main 5 human senses. It's the core to calibrate, to express, to communicate, to process signals and messages to the brain, to see danger and be able to flee, to educate by reading, observing, sensing, it's the core sense to enable living, to enable life and reality.
One cannot underestimate the power of vision. Good vision.
So here is my narrative...
The latest eye test I had in Spring 2017 identified some changes with my sight and I was re-referred to medical retina at Moorfields Eye Hospital after being initially discharged in 2015.
I say re-referred because I was under their management but I still cannot understand why I was discharged in the first place.
Someone at risk of retinopathy, you would think that I would be kept on their books right? No!
They probably thought I didn't need to be followed up regularly because there were no significant changes to my eyes. But actually, they were and this is where some clinicians get it wrong and most times to the detriment of patients. I work in the NHS so I get the fact that a reduction in the number of follow ups results in savings. However, when a patient is considered clinically high risk, the clinical decision to discharge them can often be the wrong move and that's where I felt like the decline in my sight was missed.