Diagnosed with uveitis at 11, I'm 23 now. Here's my story
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I've been reading through this subreddit and thought I'd finally share my story. I'm 23 now and was diagnosed with uveitis when I was 11, so I've been dealing with this for more than half of my life.
Over those 12 years I've gone through more treatments and procedures than I can really count. I've had countless laser procedures, LASIK, cataract surgery with lens implants in both eyes, YAG laser, steroid injections into my eyes, years of different eye drops, oral steroids, methotrexate and biologics.
The steroid injections are something I'll probably never forget. Out of everything I've gone through with my eyes, those were easily some of the things I hated the most. The pain afterward was horrible, and it never really became something I "got used to" no matter how many times I had to do it.
There have also been periods where the uveitis completely changed how I had to live my life.
Some of my worst flares happened while I was finishing my bachelor's degree in software development. There were days where my vision was so blurry and hazy that I could barely see what was on my screen, but I still had assignments, exams, projects and eventually my thesis to get through.
Somehow I finished it.
I don't think most people around me at the time really understood how little I could actually see during some of those periods because, from the outside, I looked completely normal. I'd be sitting in front of a computer trying to code or study while basically fighting my own vision the entire time.
Unfortunately, treating the inflammation has caused problems of its own.
I've developed glaucoma/high eye pressure in both eyes, and steroids can send my pressure extremely high. At one appointment my pressures were 42 in my right eye and 37 in my left. So a lot of my treatment has felt like a balancing act between controlling the inflammation and trying not to damage my eyes from the treatment itself.
I've been on methotrexate 25mg weekly for a while and have also been through plenty of prednisone. I was also taking Hyrimoz (adalimumab) injections. They're now switching me to a different adalimumab biosimilar, and my doctors are also working on getting me Acthar Gel twice a week.
At this point the goal is pretty simple: find something that keeps the inflammation controlled long term and hopefully reduces how much I have to depend on steroids.
After having this disease for 12 years, I've also become extremely aware of my vision. I notice every new floater, every little change in brightness, haze, colors or peripheral vision. I've probably covered one eye and then the other thousands of times just comparing them.
My right eye especially has taken more of a beating. It's hazier and blurrier than my left, certain colors don't look quite the same through it, and I've noticed changes in my peripheral vision. Even after all these years, when something changes there's still that immediate thought in the back of my head wondering whether another flare is starting.
The hardest periods haven't necessarily just been the procedures or medications though. It's trying to build a normal life while all of this is happening in the background.
I spent a lot of time worrying about what I could or couldn't do because of my eyes. Eventually I realized I couldn't structure my entire life around being scared of another flare.
So I kept going.
I finished my bachelor's during some of the worst flares I've ever experienced. I built a career in tech and now work full time staring at computers all day. I drive, travel, go out, work on my own projects and try to live as normally as possible.
I'm doing pretty well in life right now, but uveitis is always somewhere in the background.
The biggest unknown for me is the future. I've already dealt with this from 11 to 23. I've had cataracts, glaucoma, surgeries, injections, lasers and years of immunosuppressive treatment before most people my age have ever had to seriously think about their eyesight.
Sometimes I wonder what my vision will look like at 30, 40 or 50. I don't think that thought ever completely goes away.
But after 12 years, I've also realized there's no point spending the years where I can see worrying about the years where I might not.
I'd really like to hear from people here who were also diagnosed young and have been dealing with uveitis for 10, 20 or even 30+ years. How has your vision held up over time?
I'd also love to hear from anyone who has gone through a similar combination of methotrexate, adalimumab/biosimilars, steroid injections or Acthar Gel and eventually found something that kept their inflammation stable.
I've never really talked to many people who actually understand what living with uveitis long term is like, so I figured it was time to finally share my story.