I'm a 55-year-old wife and mother of three and was diagnosed with punctate inner choroidopathy (PIC for short) 28 years ago. This chronic inflammatory eye condition and the glaucoma that I've developed consequently has had a massive impact on me and my family.

My symptoms first began on holiday in 1994 when I was reading by the pool. I closed my left eye as the sun was bright and noticed the words were wavey on the page, parts of some words were missing. At this point, I didn't realise that this would be the start of a 32-year journey with PIC.

Once I returned home, I went for what I thought would be a routine eye test. The optician seemed nervous and after various discussions with his peers, advised me to go directly to the local eye casualty. If I am totally honest, I was scared and not sure what to expect. Initially I was diagnosed with a detached retina as my scans showed a bleed. Okay I thought, I can deal with this.

However, this was not the case. I was referred to another consultant who conducted more tests. At this point I still didn't have a diagnosis; PIC wasn't well known about at the time. The only treatment plan they had for me at the time was surgery: the bleeding capillary veins were cauterised and the retina held back down by a gas bubble; this meant I had to be face down for two weeks. The operation failed, so it was repeated, unfortunately this resulted in scarring across my central vision. It was a worrying time, but I reassured myself all would be well, as I had very good vision in my left eye.

Fast forward to 2013. After giving birth to beautiful twins, I had a hectic year of no sleep, nappy changes and late-night feeds. I dismissed the flashing, spinning light in my left eye as tiredness, until this was followed by the wavey lines and grey patches reappearing when I looked at the newspaper.

I immediately re-attended at eye casualty but was dismissed and sent home, despite explaining my history. I could still at this point read the eye chart to an acceptable level by looking around the “grey” shadows in my vision that falsely reassured them. I was distraught, I knew something was not right. I went back two days later, to be sent home again. 

Luckily, I had private health insurance through my husband's company and I sought further tests. I was sent to a neurologist who instantly looked into my eyes and could see the white spots! Finally, I had someone who was listening and taking me seriously. He referred me for more tests including OCT scans - these were not available back in 1994. My eye health had seriously deteriorated by this time. My symptoms included an enlarging blind spot, flashing lights, further distortions, and vision loss − a frightening development for me. I then met a wonderful consultant who finally diagnosed my PIC and moved my care to a tertiary hospital. This was the turning point in my journey. Most importantly I felt there was a plan to save my sight.

The relapsing and remitting nature of PIC meant that, for many years, my life, my husband's life, and my children's lives revolved around my eyes and were largely dictated by my need for treatment. I was constantly in and out of hospital for appointments and injections. I couldn't work, which meant our income was much reduced; and I couldn't plan anything, which meant no days out, no social events, and no holidays. I was totally reliant on my husband, in-laws, dad, and sister. I was very aware of the stress and worry that I was causing everyone; it was a horrible feeling as I knew they all wanted to be there for me. I stopped going out with friends as I was worried that they would get fed up asking me how things were going when I couldn't give them a positive answer. The worst moment of it all was not being able to perform as well as I wanted to as a mum; I remember having the twins in their highchairs, trying to feed them yoghurt, and missing their mouths altogether.  

The treatment I've received over the years has radically improved things, though. I've gone from being in clinic three times per week to having six-monthly check-ups. My treatment consisted of various inter ocular injections of Triamcinolone, Ozurdex, Eylea, Avastin. I also took Prednisolone and Mycophenolate. I was lucky that I tolerated my medication well and with three monthly blood tests to date I have managed well on this combination. The cycle of injections however was constant. I would flare every six weeks, being brought in for an injection. It came to a point that out of six weeks, I would only have two weeks of good vision. This changed when I had an Iluvien implant. To date I have been six years flare free, and I have my life back. I still take my medication, but other than regular blood tests, I now have six monthly check-ups.

My quality of life has been transformed: I can read a book without the fear of not being able to finish it; help my children with their homework; and simply spend time having fun with my family without worrying about it being interrupted. My life today is amazing, I can still drive, work and socialise. I immerse myself with family life and enjoy everything I want. Of course there are adjustments needed. I see them a new way to do what I want. I try to not let my eye condition stop me doing anything. There are always days when I get frustrated and feel down. However, I try to focus on what I can do, not what I can't do.

I was also supported by a patient involvement group for people with uveitis. We would meet every 3 months to talk to and teach one other about uveitis and uveitis care. I was nominated through this as a patient expert to take part in NICE's approval process for Iluvien; a steroid implant which is sometimes used to treat uveitis and was life changing in my case. This gave me the opportunity to give something back and help other people with uveitis and highlighted the part that people like me can play in providing eye care too.

My message to anyone with an eye disease, is that you are an expert on your own eyes. Listen to what your body is telling you, don't give up. If like me, you are turned away or not listened to, go back, insist on a second opinion. My persistence saved my sight. Sight loss is scary and you can feel very isolated and alone. Talk, talk, talk to others. Find a group who can support you. This can be family, friend's or through an organisation. Don't feel alone, there are people to help you.

~Alison

If you are a patient suffering from inflammatory eye disease, and would like to share your story on our website to help raise awareness, please contact us on info@uveitisstudygroup.org