Beth
My name is Beth and I am twenty-four, twenty-five in a few weeks! I am from near a city called Chester in the UK, but I now live in the West Midlands, UK.
How old were you when you were diagnosed?
I was twenty-three, nearly twenty-four when I started developing symptoms in October 2019, but it wasn't until January 2020 that I was diagnosed. My diagnosis is 'Punctate Inner Choroidopathy' or PIC for short. Currently, only my left eye is affected and my vision loss is now minimal thanks to treatment. PIC is a rare form of posterior uveitis which is thought to have an autoimmune cause. Inflammation at the back of the eye causes scarring on the retina which in turn, results in blind spots. With PIC, sometimes new blood vessels can also develop and grow in the scar space, causing distorted and permanent vision loss.
How did you cope with being diagnosed?
I think the period before diagnosis was worse. I was rapidly losing vision and no one knew why. I saw several opticians and an ophthalmologist before I was diagnosed, but no one was really able to tell me what was wrong - I had several different suggestions for a diagnosis. I was told though that it would take 6 - 40 years to lose vision. But it took just weeks and I was devastated. I didn't cope, really. I cried a lot and felt so scared.
I was very stuck with negative thoughts. I remember wondering how the next twelve months may play out; would my other eye soon be affected? Would this be the last birthday where I'd be able to see? Would I get to watch my niece and nephew open their Christmas presents next year or was this my last chance? Would I lose my driver's license?
Once I have started steroids a few months later, and they quickly kicked in, restoring a lot of my vision (including the central spots I was missing)! I finally started to feel like there may light at the end of the tunnel. I started to cope a lot better at this point. Although every day is still hard and scary - I am always fearful of another flare-up - I now find it easier to get on with and enjoy life!
What has been the most difficult since your diagnosis?
I think the most difficult part of PIC post-diagnosis is the anxiety it brings. Although I know and appreciate that I have so much more vision than I did at the beginning of the year and that now my eyesight is pretty normal (the remaining blind spots don't hugely interfere with my vision), it's the fear of losing it again that terrifies me.
I am on immunosuppressants in an effort to prevent another flare-up, but I find myself often preoccupied with anxiety, constantly worrying that the medication won't be enough to hold me stable. It's very hard to manage these feelings of anxiety because no one around me understands the fear of losing vision, but luckily, I've met people through online support groups that have been a huge help. These people have all had a very similar journey with vision loss, and so they can completely emphasize and help ease the anxiety that sight loss brings. We're all in this together!
Have medications affected you in any way?
Medication has been both incredible and difficult. Whilst the steroids, injections, immunosuppressants, and steroid implant have all helped transform my life by restoring some vision and helping to stabilize my condition, the side effects have been very testing with issues like tiredness, weight gain, moon face, and high eye pressure. Now though, my body has either adjusted to minimize side effects, or I've taken additional medications to help control them.
Despite the side effects, I would do it again, if needed. I feel that the benefits outweigh the disadvantages. The treatment and medications I've had have bought back some of the vision that I thought had gone forever and enabled me to read again using my left eye. So, for anyone reading this, don't let the side effects put you off - if it helps you keep your vision, then just remember, it's worth it!
What is your experience with doctors and medical care?
It's been very varied. In the beginning, I think I found it really frustrating as I felt that there was a lack of empathy; there were a couple of occasions before I was diagnosed when I was just sort of bluntly told that I was progressively losing vision.
At times it has also felt like I've had to push for referrals and appointments, and I often have to explain to people within the medical field what my condition is, how it affects me and what medication I'm on for it. I don't blame anyone for these experiences though; I guess it's just part and parcel of having a rare disease.
The ophthalmology team that looks after me now is amazing though. They often check in on me, explain everything to me in detail, answer my many, many, many, questions (they are very patient), and get me in quickly if I report changes. They have even helped me get appointments for other medical issues not related to my eyes! I am very grateful to be under their care.
the doctors and medical care.
What is a misconception that people have about uveitis or just about vision impairments?
I think there is a big misconception that vision loss means total blindness and no independence. For the majority, this isn't the case; a lot of people still have some useful vision. I also feel that people don't know how devastating vision loss of any degree is.
I don't believe that people know that there is a whole range of conditions that can cause vision loss. I feel that a lot of people are unaware of diseases like uveitis, glaucoma, Stargardt's (to name a few), and that each of these describes a different form and cause of vision loss. I also don't believe that wider society understands that vision loss can also be issues like scotomas, metamorphopsia, photopsia. Again though, I think it just highlights a need to raise awareness.
How do people react when people find out about your diagnoses?
It varies. A lot of people are interested and want to know more, others feel awkward, and some say that they can't tell anything is wrong with my eyes.
Maybe I bore people, but I like telling them about it because again, it's just more awareness!
What advice would you give to someone who has been recently diagnosed and or is struggling?
It's okay to feel upset and scared. The Macular Society (an amazing UK charity!) told me that the feelings experienced during vision loss are similar to those we feel during a bereavement. Take the time to feel what you need to feel.
Don't be scared to reach out to online groups. There are people in those groups who have been going through it for years and can offer some great advice. They are amazing shoulders to lean on, and they make you realize that although uveitis feels very isolating, you're not alone. And finally, always tell your care team about any changes you experience - even if they seem minor. They are there to look after you and help you stabilize your vision, so make sure you work together by sharing any changes you see with them.
