The Ocular Immunology and Uveitis Foundation

My Experience with Idiopathic Uveitis: A Personal Account

Uvea-WHAT? I have inflammation WHERE?

A friend took me to the emergency room at Massachusetts Eye and Ear infirmary after my "pink eye" did not respond to antibiotic therapy. Light of almost any brightness caused pain in my eye. I covered my face to avoid the headlights of oncoming cars as we drove to the hospital. My eye ached in an unfamiliar way. Despite how much trouble I was having, it never once occurred to me to seek emergency treatment. Who ever heard of going to an emergency room for "pink eye!"

But, there I was, in the busy registration area waiting for my turn to be examined. I thought to myself . . . "I have never been in a room with such terrible lighting" . . . white florescent lights, GLARING, in the small waiting room. Have I explained that light hurts your eyes when you have iritis? If you have had iritis, you already know what I mean. If you have not had iritis, the best I can do to explain the discomfort is to have you imagine a muscle spasm. Think back. Ever had a spasm in the calf of your leg? Now, imagine having a muscle spasm in your eye. Enough said.

Back to my ER story. The examination could only be accomplished using a VERY BRIGHT LIGHT! . . . "You have Iritis" . . . What?. . . "Iritis. An inflammation in the iris of your eye" WHAT?. "I-RI-TIS"! The friend who accompanied me to the ER, an experienced physician, thought the Resident was overdoing it as he ticked off the unlikely but possible disorders that might be causing my iritis: "Sarcoidosis, Lyme disease, arthritis . . . a much longer list than I can recall . . . "All very unlikely", he explained, "but possible. I need to advise you . You have iritis in one eye. It is unusual to get iritis in both eyes. Use this medication. Instill these drops every hour that you are awake. You can't use them too often. Come back tomorrow."

I returned to the ER "walk-in clinic" the following day. And, I was to come back many more times over the next several months. I was prescribed several kinds of eye drops, dousing my eye many times a day with the medication. My eye felt OK as long as I took the drops frequently. But, each time I attempted to "taper" off the drugs (prednisone ophthalmic drops), the soreness and sensitivity to light returned. Its like your sore knee feels when you stop taking aspirin -- except its in your eye.

After about eight weeks my other (uninvolved) eye began to hurt. No mistaking THAT sensation! Sure enough, rare or not, now I had "iritis" in both eyes. Same routine. Use the drops; taper the drops; flaring. Use the drops. Taper the drops. FLARING. Some weeks later I noticed that my vision was covered with what seemed like a fine dust storm. I could see the "dust" floating in both eyes. And, when I moved my eyes, the "dust" would slosh around in the direction opposite that which my eyes moved. I had never had anything like THAT before this I-RI-TIS stuff.

Finally, during one exam, after yet another attempt at tapering off the drugs, the pupil of one eye was fixed and larger than the pupil of the other eye. And, one iris had begun to change colors! Those events seemed to be the final straw. That is when I got referred to Dr. Foster. "He knows more about the problem you have than anyone else in the world" said the referring physician.

So, as I was to learn time and again, in his characteristically generous, open door, no-barriers-to-getting-the-care-you-need-from-ME way, Dr. Foster "fit me in" to his already busy schedule and I was seen the same afternoon I was referred.

"Did he get it right?" asked Dr. Foster after listening to the "Fellow" summarize my history for his professor. A very careful examination followed with MORE VERY BRIGHT LIGHTS . "Question her closely about exposure to Lyme disease" said Dr. Foster to the Fellow as, for the moment, he moved on to see another patient.

Uvea-WHAT? . . . "Uveitis" . . . I have what? "U'VE-I-TIS. It is an inflammation of your UVEAL tract" . . . What? . . . "UVEA. The middle layer of your eye" Dr. Foster explained patiently. "The middle layer of the eye, between the sclera and retina, is called the uvea. When the uvea becomes inflamed, the condition is called uveitis." He changed my medications around. The next day I was back, the inflammation having worsened. He doubled my medications.

So, some two years later, I reply if asked that I have "idiopathic uveitis, OU, mostly anterior". And, I can describe what that is; inflammation in both of my eyes; of unknown cause, mostly in the front of my eyes.

And now friends ask . . . "You have WHAT?" U'VE-I-TIS I explain patiently . . ."What causes that?" I tell them that I don't know and that my doctors are stumped about what's causing it. And, that is apparently the case for many patients.

Other symptoms, other treatments . . . I am putting WHAT in my eyes? . . . "Prednisone." I have glaucoma from WHAT? "Prednisone causes the pressure inside your eye to go up. It happens in some cases" . . . "Koeppe's nodules" . . . I have WHAT? . . . "You will need to take a large dose of prednisone, starting today, to treat this. It is very serious. Your eyes could get scarred if this isn't treated immediately" . . . A large dose? . . . "You may find yourself cleaning your house a lot" . . . Actually, I found that I gardened a lot, but who is going to get into a debate about gender stereotyping at a time like that! Prednisone, as it does with many but not all people, made me very restless and I had difficulty sleeping.

So, I told my work associates and my family to be on the lookout in case I got 'loopy' from the prednisone . . . "Just let me know!" The good news about the Prednisone is that, because of this wonder drug, I could see well enough to work on a grant that was due in just 5 short days. By day 3 I couldn't sleep, but I WAS getting a lot of gardening done! By day 5 I had difficulty figuring out what I was staring at on the page. I took a few days off. (We did get awarded the grant!).

After a week of being blasted into orbit on 80 MG day of prednisone, I was examined again for "the most classic Koeppe's nodules we have seen in a long time". They had receded . . . "Your eyes really like prednisone" I was told. (Well, my eyes like prednisone, I thought to myself, but the rest of me sure doesn't). My internist insisted that I wear a MedicAlert bracelet . . . A WHAT? . . . "A MedicAlert bracelet. Because, if you were to require emergency treatment, it would be important for the doctors to know you are taking prednisone. "

And so it goes. I have had this illness now for 25 months. It seems longer -- and shorter -- at the same time. And, I have been on a lot of different medications. I know the "Foster Treatment Algorithm for Management and Therapy of Recurrent Non-granulomatous Anterior Uveitis" by heart. I have read everything I can get my hands on about uveitis, scleritis, and a whole host of other "itises" that I never knew existed.

And, I still don't know what "Koeppe's nodules" are. But, I have seen photographs of my Koeppe's nodules . . . gorgeous, amazing photographs, TAKEN WITH VERY BRIGHT LIGHTS!!

It is difficult to describe my "awakening" about the potential life-altering consequences of uveitis. For a while I searched the web intensively for information about uveitis. And, in the course of reading about "ocular inflammatory disease" I developed yet another "itis" -- "medical student-ITIS". One of the many forms of "itis" I was destined to experience with this strange illness. After a while I "got it" that uveitis can be big trouble. And, after 17 months of illness, I still did not know even one other person who had uveitis. Amazing, really, when you stop to think about it.

Great! Alright! I GET IT NOW! I could possibly be blinded by this illness. Who do I talk to about coping with this trouble? What do other people do in my situation? "Uveitis is the third leading cause of blindness in the United States". Where is everybody else? In Dr. Foster's examining rooms it seems. But, they don't live on my block, work in my office, or attend my school.

I can be pretty dense about some things. I had been staring, for months, at the Uveitis Support Group posters that abound in the waiting areas of the Infirmary. Finally, it dawned on me that the support group was designed for people like me; for people in EXACTLY my situation. That is when I gathered up my courage and took myself to a Support Group meeting one Thursday evening in March. I am so glad that I did.

You may wonder how this story ends. So do I. I have had a "good outcome, all things considered". After 17 months of treatment the inflammation was quelled. After 25 months I have my health, most of my vision, and I am wiser for the experience of struggling with a truly life-altering illness. And, I have met some truly amazing people in the process.

I worry about losing more vision; perhaps more than I need to. Perhaps not! I am relentless with my physicians when my "visual acuity" goes astray. And, I struggle with the shame I feel when I get self-absorbed about my "minor" vision loss; especially when I see what others have endured. I HAVE had a good outcome. So, why isn't that more comforting? Why do I worry? Mostly, I think, because the future is so ambiguous.

I am amazed by how precious every little bit of vision is and how much I miss even a little piece of it once it is gone. Every small vision loss requires a personal adjustment; an adjustment that is invisible to others except, perhaps, for the emotional toll.

And, so many things that I have always taken for granted are now unanswerable. Will I be able to drive a car safely in the future? How will I earn my living if I lose more vision? What do friends think when I turn down invitations because it is difficult for me to drive at night (they think I am silly and should just ask for a ride). And, will I ever see well enough again to play my beloved chamber music? I can adapt, but I don't want to have to! I am pretty sure that these are exactly the same kinds of questions and worries that anyone with a serious illness engages. UVEA-what? A serious illness? I get it now.

My advice, if I may, to those reading this. Consider joining theUveitis Support Group sponsored by the Immunology Service at the Massachusetts Eye and Ear Infirmary. We are very fortunate to have such a group here in Boston. It is an exceptionally rare resource as I have learned from talking with others "online".

If you have uveitis, or if you are the loved one of a child or adult who has uveitis, think seriously about going to a Support Group meeting. You, too, will meet, and, I hope, get to know some of the same wonderful and resourceful people that I have gotten to know. The fellowship is invaluable. And, you WILL meet someone else who has this infrequently diagnosed but life-altering illness. And, if you are a parent, family member or friend, you will meet another family member or friend or parent who lives with U-VE-ITIS and who also knows its effect on the family.

To end this "story" I need to return to the beginning for a moment. A completely unintended consequence of this experience is that I have gotten to watch many physicians and their staff as they go about the business of treating those of us with ocular illnesses. As a result of these experiences, I will never, ever again, think about an "eye doctor" in quite the same way. When I am frustrated by not knowing the cause of my illness, I think about the physicians who treat me; how consistently they remain engaged with these difficult problems; and, the determination with which they grapple with the unknowns; the quality of the research that informs their work; their intellectual honesty and ability to say "I don't know" and to remain engaged in the battle despite "not knowing". It is inspiring, actually, and oddly comforting not to be the only one who doesn't know. And, of course, at the same time, I wish there were a simple answer.

And, I have come to enjoy watching the young physicians in training as they progress and develop their skills. And, I am certain that one of them, one of these days, and very soon I hope, holds the key to the future of these illnesses. And, that brings me back to the beginning of my story.

Did I mention that the "Resident" who treated me during my first months of "iritis" was, in fact, I was later to learn "the youngest graduate ever of an American medical school." A real 'Duggie Houser', it turns out, right here. Who would have known! He took wonderful care of me, as have the rest of my team. I am very appreciative.

Thanks everyone.

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