How inflammation from multiple conditions led to an eye emergency

My vision is a little blurry when I wake up. I rub my eyes to get them to adjust. My right eye clears with no issues, and I stretch while looking out the window. But my left eye feels off. My vision is still a little cloudy, and it feels like something is rubbing my left eye with each blink. Is there an eyelash, a piece of lint, or some other foreign object in my eye?

I wander to the bathroom to look at my eye in the mirror. I lean in and almost stumble backward in shock. The white of my left eye, called the sclera, looks bunched up and is cream-colored, like dough hanging out of a mold. Each time I blink, the bunched-up section is getting pinched in between my eyelids. It feels like sandpaper rubbing my eye, and the more I blink, the worse it gets.

At the moment, though, the pain is the least of my concerns. It looks like my eye is separating or leaking out of my eye socket.

Panic isn’t a strong enough word to convey what I feel in this moment. Is my eye damaged? Did I hurt it while sleeping? Am I going to lose vision in my left eye? All of these questions swirl in my head as I scroll through my phone to call my primary care physician. Wait, do I call my primary care doctor or go straight to an eye specialist? 

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As someone who suffers with multiple chronic and rare illnesses, my usual rule when dealing with new symptoms is to contact my primary care physician first. I explain my newest nightmare symptoms to the person on the phone, who schedules me for later that day.

This particular scenario happened years ago, and during my appointment, I sat with my left eye closed because it was the only way I could get any relief. When the doctor entered, I didn’t even realize that tears were streaming down my face. Concern was etched on his face. To try to reassure me, he said he didn’t believe it was a permanent issue.

It’s important to note that I have four rare autoimmune diseases (atypical hemolytic uremic syndrome or aHUS, immune thrombocytopenia, thrombotic thrombocytopenic purpura, and lupus), a connective tissue disorder (hypermobile Ehlers-Danlos syndrome), and a lot of comorbidities caused by my diseases. aHUS is what we consider my primary disease because it’s the rarest and most damaging and comes with the most comorbidities.

Like many patients who live with autoimmune diseases, I deal with inflammation daily, whether it’s in my feet, ankles, stomach, or face. Between aHUS, hypertension, kidney damage, and May-Thurner syndrome, I’m almost always guaranteed to have some type of inflammation.

Scleritis was the new word my doctor threw at me. John Hopkins Medicine says scleritis is a condition in which the sclera can become swollen and inflamed. It can be extremely painful and even damaging to the eye. There are two main types of scleritis: anterior and posterior. I was suffering from the more common of the two, anterior scleritis, meaning the swelling occurs on the front of my eye.

Years later, I still deal with scleritis. Last weekend, it flared up really badly in my left eye again. One small thing that has made it more bearable is that it only affects my left. We think this is because of May-Thurner syndrome, a condition that affects blood flow and causes increased and uneven swelling on the left side of my body. Thankfully, it has never crossed over to my other eye.

While scleritis is painful and scary, I now manage it with corticosteroids, cold compresses on my eye, and closing my left eye when I’m at home resting. If I can keep my body inflammation low, it lessens the chance of a scleritis flare. Knowing is half the battle, and being fortunate enough to receive a diagnosis of what was happening to me is reassuring.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.