Lauren was diagnosed with PIC only six months ago. Please have a read of her journey so far...
Hello! My name is Lauren I'm from Ireland, I’m 24 years old and I was first diagnosed with Punctate inner choroidopathy in August 2020 (a rare sight threatening condition caused by inflammation at the back of the eye. It is most common in women, and in short-sighted people.
Like most stories you hear my symptoms came out of no where; one day I noticed a little blurring in my right eye. At first I thought I had scratched some part of my eye a little too hard and it would heal itself, but a good trait of mine in this regard is that I worry about every small thing, so it wasn’t long before I told my parents and doctor and was sent to A&E.
It turned out this rare disease was triggered, and I was now beginning a very scary change in my life. By the time I got seen I had two black spots in my central vision of my right eye; this was caused by what I now know is called a flare up and I had now permanent blind spots in my vision.
I will be forever be grateful for the clinic and consultants that have been treating me the past seven months; I know that not everyone gets treated the same, and if you are someone who had to suffer the consequences of poor care, I’m so sorry.
There is no one “cure” for this disease, so as many of you that have this condition know, it’s all about rescue and prevention! My treatments began with steroids, which worked for a while until my eye did not like tapering off them, and in less than two weeks, I was back to get an emergency avastin injection ( an injection in the eye itself ) - one of the most traumatizing experiences I have ever faced, but my eye was getting better, so I was over the moon. I would take a million injections over losing more of my vision any day.
Unfortunately after my second one, a new blind spot began to appear and as of now, I am on my third round of oral steroids to hopefully burn this flare up out!
That is my story so far; I’m relatively new to this. I take every day as it comes, and some are harder than others. Nothing prepares you for something like this, but I have amazing people around me, an amazing support group who have helped me more than any one could ever! And people like Beth, the Macular Society, and others that push so hard for more research to be done so we can find out more about this disease and many others!
If you are reading this and you have never heard of this disease, it is because it is apart of those rare diseases that you never hear about, but people like me and so many others struggle with every day. If you are apart of this community I want you to know you are not alone and we will fight this together! Thank you for listening to my story, and thank you to Beth for letting me share it!
Comments