Thank you to Danielle, for sharing her journey with Posterior Uveitis and Choroidal Neovascularization. Danielle also shares the challenges she has faced with her eye conditions, and how she continues to stay strong.
What is your diagnosis?
I was diagnosed with posterior uveitis (both eyes but primarily in my left) and choroidal neovascularization in my left eye.
How long have you been diagnosed for?
I was diagnosed in Feb 2019.
What were your signs and symptoms/how did you come to be diagnosed?
I noticed my vision was suddenly very blurry but dismissed it at first. I was sick at the time and convinced myself it was just due to sinus pressure. I didn’t really believe it but I think I was just scared (and didn’t want to pay for a doctors visit). I also think part of me was hoping if I ignored the problem it would resolve on its own. I finally sought treatment after I noticed that if I covered my right eye there was a large hole in the center of my vision in my left eye. I went to urgent care and the doctor gave me a prescription for a sinus infection and told me to follow up in a week with my eye doctor if my vision issues didn’t improve. After a week I called my eye doctor and explained my symptoms. They told me I needed to come in immediately and see the on call doctor. He did an examination and told me I needed to head right to the emergency room at Mass Eye and Ear(a specialty hospital in Boston). Once I got to the ER they examined me again and performed every test imaginable trying to figure out what was wrong. They weren’t able to diagnose me that day but they were able to rule out plenty of options. From there I was referred to the retina specialist who suspected it was uveitis and sent me to the uveitis specialist. She diagnosed me with posterior uveitis and has been treating me ever since.
Had you, or anyone around you, heard of your condition before you were diagnosed?
No, I had never heard of it.
How does the condition affect you?
I have some permanent central vision loss in my left eye, flashes and floaters in both eyes, light sensitivity, and poor night vision. The vision loss causes distortion in my vision(lines appear wavy, details can be hard to make out).
Have you had/been able to have or try any treatments at all?
My doctor initially wanted to give me a steroid implant but my insurance denied it. Mainly I have received intravitreal steroid injections which have worked well for me. When the inflammation was active in both eyes(which thankfully has only happened once) I was put on high dose oral steroids instead. Currently I receive an Eylea injection every month or so to treat the choroidal neovascularization in my left eye.
How has the condition impacted your life?
Currently my vision is stable so the only impact is the distorted vision. When the inflammation is active there is more of an impact due to an additional decrease in vision.
What have been the biggest challenges you've faced since having this condition?
The biggest challenge was coming to terms with the new normal. Everything came about so quickly it was hard to process. I was really depressed and angry at first. After my diagnosis I stopped doing many of the things I used to enjoy because they were too challenging. I have been decorating cakes since I was in high school but when my vision first changed I stopped decorating and baking all together. It was really hard not being able to do something that had become such a huge part of my identity at the same level I always had. I can be pretty stubborn and had basically decided if I can’t do it the same way I won’t do it at all. Thankfully my family basically forced me to pick it back up. I still remember the first cake I made after getting back into baking again. It was a Bob’s Burgers cake for my sister’s boyfriend about a year after I was diagnosed. I became so frustrated while making it because it wasn’t turning out how I envisioned it. It took me most the night and had to be redesigned several times throughout the process but I did it. That cake is still one of my favorites not because it is perfect but because it showed me I was still able to do what I loved.
Have you experienced any positives during your sight loss journey?
I am willing to take more chances than I once was. I’m not a daredevil by any means but I’ve just learned life can be unpredictable so you might as well have some fun when you can. I also now have a pretty impressive dad hat collection(they help with the light sensitivity) which I think is pretty positive even if my bank account disagrees.
Do you have any advice for newly diagnosed people?
When you’re ready, seek out other people who have the same or a similar diagnosis to you. Friends and family can be supportive but there’s something about talking to someone who knows exactly what you’re going through. I have found it so helpful hearing other experiences with uveitis.