Hi,
I’m Jack, a 36-year-old living in Witham, Essex, in the United Kingdom.
I have never been one for opening up. I am quite a private person, and putting myself out there is difficult for me. My therapist suggested sharing my story as a way of processing things.
I have been inspired to do so by all the stories I have read through Warrior of the Week. I thank you all.
My visual health history is quite complex.
I was born with Axenfeld-Rieger Syndrome, a genetic condition I inherited from my father. I was born with malformed eye structures, including uniquely shaped pupils and irregular drainage systems. One symptom of ARS is congenital glaucoma. Glaucoma is a condition that affects the drainage of fluid from the eyes. The resulting buildup of fluid puts pressure on the optic nerve, causing permanent damage.
I have spent my whole life visiting Moorfields Eye Hospital in London, England, managing this condition. I have been on numerous medications and have undergone a number of different eye surgeries as a result. Despite all the medical interventions, my vision has been in constant decline my entire life.
When I was 17, the retina in my right eye partially detached out of nowhere. I spent the following weeks having treatments and procedures to reattach it.
When I was 19, the pressure in my right eye became uncontrollably high, despite being on the full range of medications. This is when I had my first glaucoma surgery, with a tube inserted into the eye to assist with the drainage of fluid.
But when I awoke from this surgery, something wasn’t right. The tube had “worked too well.” The sudden and rapid reduction in fluid caused the eye to hemorrhage and the retina to detach fully. I have had no vision in my right eye since.
I have since had two tubes fitted in my left eye without issues.
I was diagnosed with VSS in about 2020.
I had always associated anything visual with Axenfeld-Rieger Syndrome, glaucoma, and the subsequent trauma to my eyes.
Thinking back on it, I may have been experiencing symptoms of VSS from quite a young age. I don’t remember ever seeing pitch black when I closed my eyes. It would always be a nebula of swirling colours. I have also had excessive floaters, ghosting, and starbursts for a long time. None of the visual symptoms were overt or oppressive back then.
Headaches were a regular occurrence.
The first time I remember noticing the snow or static itself, outside of the closed-eye nebula, was during a pinhole vision test at a glaucoma checkup in about 2017. I remember looking through the pinholes and seeing all these shimmering cellular shapes, but as soon as I stopped looking through the holes, they disappeared. I told my consultant, and she looked inside my eyes but couldn’t see anything to explain it. All was physically normal, for me anyway. I shrugged it off and continued on.
But after that, I began noticing it more and more.
It started off only being in low-light scenarios. I was now able to see the swirling nebula without closing my eyes. In 2018, I went on a camping adventure through Southern Africa. Each night, we would look up at the sky, with everyone else pointing out interesting constellations. But I couldn’t see the stars in the sky, just my own.
Today, the snow is constant, day and night. Other symptoms have intensified: even more floaters, stronger starbursts and ghosting, night blindness, and afterimages. Tinnitus too.
The regular headaches I have experienced, I have since been told, are most likely migraines.
Luckily for me, the diagnostic process was fairly straightforward. I was already attending the eye hospital on a regular basis, and at that time, VSS was a known condition.
I was discharged from Moorfields’ Neuro-Ophthalmology Department a couple of years ago. The suggested course of action was to practice mindfulness.
I have always tried to have a “roll with the punches, get up and keep going” attitude when it comes to my visual health issues. But with VSS, it has been really tough to keep that mindset. It is always there, shimmering away. At home, at work, on days out with my daughter, and while playing football with the guys. It is relentless. I can’t even close my eyes to escape it. My closed-eye nebula, once a fun retreat, is now a constant drain. My mental health has suffered.
I have been aware of VSI for a few years now and have tried to keep up with the goings-on as much as I can, although I admit I have fallen off from time to time. They have done so much for the recognition and diagnosis of VSS. Their advocacy and continued research are great to see and give a lot of hope for the future of VSS treatment.
If you have read this far, thank you. I hope my words have resonated in some way.
Our stories may be different, but we can be together in the experiences we share.
You are strong. You are brave. You are not alone.
