Thank you to Annabel for writing up her story - Annabel has had quite a journey, with changes to her vision happening during the early stages of pregnancy.
My eyes haven’t always been the best. I’ve been short sighted since I was around 9 or 10 but never had any major issues.
In September 2019 I just found out I was pregnant with my second child. We went away for a weekend and I noticed a small blurry sport in my right eye vision. I didn’t think much of it, wondered if maybe I had something in it. I returned to work and noticed it again when looking at writing on the computer that the small spot was still there, it was a black patch, blurry and making my vision really distorted.
I booked an eye check where they took photos of my eyes. My left eye was fine but my right eye showed lots of little white dots. Nobody knew what it was so I was referred to an eye clinic locally. I waited and had my appointment around 7 weeks after where again, nobody could tell me what was going on. I was asked lots of questions and had numerous eye tests done but no answers were given. I was told I’d be referred to the Eye Clinic at my local hospital and to wait for an appointment to come through.
By this time it was February and I was around 7 months pregnant. I was looking at my phone one day, tired and just staring blankly when I noticed a small patch in the bottom of my right eye. It looked similar to TV static or one of those filters on Instagram where it glitters and shimmers, like a sparkling light. I’d been waiting a while for an appointment so my mum asked me to go to A&E to get it checked urgently. We sat in A&E waiting for news and they referred me straight to the eye clinic the following morning. I was then, for the first time in months after initially noticing the problem, diagnosed with a rare eye condition called Punctate Inner Choroidopathy. A weak spot in my central vision (the white dots in my eye) on my retina was allowing my eye to attack itself and the blood vessels were pushing through my retina causing the spot in my central vision to be blind and the vision around it blurry.
As I was pregnant there wasn’t much in the way of treatment available, given the rareity of the disease and the lack of studies of the effects of possible treatment in pregnancy, my consultant and I agreed to monitor it closely but leave it until I had my baby.
It remained stable for a little while and in April 2020 I had a healthy baby boy. 4 weeks after he was born I noticed my vision was getting worse. The blind spot was getting worse and bigger, and my vision in both eyes had started to see double. I was seen by my consultant where I had eye scans and was told immediately I needed an injection the next day to slow the aggressive blood vessels pushing through my retina or I may lose my central vision within a matter of days/weeks.
I had an injection in my right eye of a drug called Avastin, a drug used in chemotherapy and chronic eye diseases to slow the growth of blood vessels in the body. I was advised by several doctors and consultants to stop breastfeeding immediately due to the drug, something which for me was really hard to take in. For me, and very luckily, the injection into my eye seems to have worked so far.
Fast forward 9 months, after many monthly scans and check ups, it seems to be holding its own for now. The blind spot in my right eye will never go or get better. I’ve learnt to adjust my vision with it. It makes reading or looking at screens difficult, it’s like having a section of your vision missing and then looking to the side of it makes everything seem wobbly and wavy. It gives me headaches and I feel like I’m straining my eyes sometimes to make sense of what I’m looking at.
I know very little about the condition which has the potential one day make me go blind. It’s a rare disease with no factual knowledge on what causes it. It’s thought to be an auto-immune disease which effects younger myopic women more but very little research into it has been carried out. There’s no rhyme or reason why it happens so far but there are questions surrounding if it has something to do with hormonal changes. When I was diagnosed I was given next to no information by doctors be issued there isn’t much available. Anything I have found out has had to be through my own research online and from a Facebook group which has given me so much more information from others’ experiences.
Not knowing what will happen with my PIC condition or when it will happen scares me the most. Some people can go years without having a flare up for it to just hit them randomly one day. Others aren’t so fortunate and need far more aggressive treatment than mine for it not to work at all. But that’s what it is, a chronic and aggressive macular disease. It can make you feel scared and alone at times because so many questions remained unanswered. It’s a wait and see kind of disease as to if it flares up again and/or when. I would love one day to have another child but the potential for it to be brought on by the change in hormones scares me. I feel like it’s holding me back from one of the best things I’ve ever done in my life. I don’t know what will happen but for now I’m incredibly grateful to have what vision I do have to watch my beautiful boys grow. I hope it stays this way, or at least if my right eye flares again and fails me completely, my left eye will remain clear. Maybe one day more studies will be carried out to answer some of the questions that I and many others with PIC have.
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