Irene has been kind enough to share her experiences of PIC to help raise awareness of the condition for Rare Disease Day (28th February). Please take a look at her story...
For rare disease day, I am telling my story to increase the awareness of my rare disease called Punctate Inner Choroidopathy. It is a rare and severe sight threatening condition caused by inflammation at the back of the eye. It is more common in women, and in short-sighted people.
We do not fully understand what causes PIC, although there is some evidence that it may be an autoimmune condition. This means that instead of fighting off bugs, the immune system also starts to attack healthy tissue.
PIC causes small patches of inflammation in the retina and choroid. Sometimes new abnormal blood vessels grow through the inflamed spots and leak, which can lead to a sudden loss of central vision.
Treatments fall into short-term ‘rescue’ and long-term ‘prevention’. Rescue treatments use corticosteroid tablets or injections to suppress the inflammation, or anti-VEGF injections to stop new blood vessels spreading and leaking.
I got my diagnosis about three years ago in both eyes, and have been in the hospital every month since. We never reached “under control”. The only thing that keeps my condition stable is a high dose of steroids. They have real severe long term side effects, and you should not take steroids more than a couple weeks. I have been on them for almost three years now. I function really badly on them both physically and mentally. So two years ago they started immunotherapy - it should replace the steroids.
Unfortunately I tried three different types, but every time I tapered the steroids (which can take months because a person needs to withdraw from them slowly), I had inflammation of the illness. And because of the active lesions, they had to rescue the sight with more or less than 50 anti-VEFG injections and 5-7 steroid capsules in my eye. And again, I was back on a high dose of oral steroids.
Last year I levelled up to a new category medicine, the biologicals. They also suppress your immune system (which is very hard when there is such a thing as a Coronavirus). But you cannot take the meds [orally]; you have to inject yourself in the leg or in your belly. So far, so good. I am tapering prednisone again, hoping that I can stop with a lot of other meds and eye injections. This biological, I should keep using. Excited as always! Hoping this thing will work... but also terrified that it will not, knowing that every time we try something, there are only few options left – and [then] I’d have to start high dose on steroids again.
But the good news - I still see! And I enjoy every day that I can see the beauty of my children, flowers, sunsets, nature and every other beautiful thing.
Thanks for reading my story. I hope by telling this I can help by the awareness and the need for research for this condition.
Picture description:
Picture one: Irene has taken a selfie. She is wearing her glasses and has a white surgical eye patch over one eye due to recent treatment. She is wearing a blue/white disposable facemask.
Picture two: a large pill caddy containing seven rows across, and four down. Each section is filled with difference coloured tablets, all needed to help control Irene's PIC.
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