Kian

Traveling to Boston

OUR BOSTON ADVENTURES – THERE’S A LOT OF HISTORY HERE

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Alexa

Alexa and her family traveled to Boston from Oregon to meet with Dr. Foster.  Alexa was actually able to get  Dr. Foster to sit down long enough to have this picture snapped. Alexa is great at getting people to smile (and, apparently, to sit down).  Now, we all know that Dr. Foster wears gorgeous, colorful bright ties, and we look forward to “seeing” which one he will choose to wear next!  BUT, we had forgotten to prepare Alexa about this one important fact . . . . . . . . . . . in his office, Dr. Foster’s ties shine especially brightly!    Well, unprepared as she was, Alexa had to close her eyes for a split second.  Oh!  And, of course, that is exactly when her picture was snapped.  Of course!

Alexa’s mom sent a note thanking ” . . . the Uveitis Support Group  for helping us find Dr. Foster . . .”  She and Alexa are members now, too, and send notes regularly through the “group’s” online connection, www.uosg.org.  You can participate, too.  Just click here and check us out.

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Em’s Excellent School Adventure: Math

It’s 12 noon, 15 minutes left to 6th period math class. Mr. Butner, my eighth grade sequential one math teacher has been droning on for 83 minutes about quadratic equations. I look around the room and observe my fellow classmates, staring off into space and doodling in their notebooks. Then I realize it’s time for me to get out of class to do my 12:00 dose of Vexol. I guess that’s what’s called a bitter irony. 

Discovering my disease was a fluke. When I was 8, my mom took me to the eye doctor because one of my eyes looked like I was having an allergic reaction. After examining my eyes, the doctor actually found iritis in my other eye. The redness and itchiness had nothing to do with my disease, although ultimately I was diagnosed in both eyes. It was like someone had sent us a sign that something was wrong. If it was wasn’t for my mom and her “over-protectiveness” I would have begun to lose my vision. Thus started a long journey of doctors’ offices and prednisone eyedrops and dilating drops and monthly visits (and more) to the eye doctor.

I’ve seen so many eye doctors with so many opinions on what should be done about my iritis/uveitis in the past few years. It’s getting to the point where if I have to listen to my mom tell one more doctor my medical history, I’m going to become physically sick. Up until recently, I never felt that my disease was really impacting my life. So I had to do nine eye drops a day. I guess I got used to it.  My mom and I would be driving home from an appointment after more cells were discovered and she would ask me, “Emily, how come you aren’t affected by this?” I would say that all it meant was another drop every day. It didn’t affect my daily life. But now I am fourteen, and my disease has definitely had an impact on my life. Last year when my eyes were being examined at a monthly appointment, my eye pressure had suddenly increased. I was given glaucoma drops, and everything has changed.

Now I’m on a drug to deal with this new problem because everything has changed. It’s called methotrexate. Methotrexate. It’s such a scary name for a drug that every ophthalmologist I’ve spoken to describes as a miracle drug. Why can’t they name it something else? Like, oh maybe, “Trixie?” Then on Sundays at 10:00 a.m. after breakfast I could say to my mom, “I’m taking my Trixie now!” Or at least something a little more kid-friendly. After all, there are a lot of kids, including me, who are depending on this drug to keep their eyes “quiet.”

To be perfectly honest, I’m not exactly sure how I feel about my disease. Some days I’m scared; some days I feel like going a little bit crazy and screaming and punching a pillow; some days I feel adrift and not totally connected to my situation. But on some rare days I feel strong and determined to beat this disease. I know I’ll do whatever it takes.

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 Bridget and Meredith Team Up for Uveitis Research

Bridget and Meredith Quirk carried the Olympic Torch on behalf of uveitis patients everywhere on December 27th, 2001 in Braintree, MA.

What a spectacular day!

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France’s Story

I was diagnosed with uveitis related to juvenile rheumatoid arthritis at age 11. My school detected vision loss on a routine exam. When I went to the ophthalmologist, for what we thought was glasses, the uveitis was diagnosed. Unfortunately, I was then inappropriately treated for ten years with steriods, which left me with a lot of structural damage in both eyes. My left eye is legally blind as a result. Thanks to Dr. Foster’s state of the art care and the starting of immunomodulators, my vision in my right eye was saved and I have been in remission for nine years.

I thought I would focus this story on those issues that change ones life, when you have a chronic illness, such as uveitis:

Frequent eye appointments/eye drops – I do not recall being negatively affected by either of these nor harboring any resentment. They became part of my routine and still are. I put my own eye drops in and managed my medications from the time I was diagnosed. When I became 19 or 20, it became extremely important for me to attend my eye doctor appointments alone, which my mother, although hesitant initially, did let me do.

Body Image Changes – In the seventh and eighth grade, my left eye became opaque secondary to my cataract and also the eye started to float outward. My male peers in school would tease and would ask each other within my hearing distance, who is she staring at, me or you? It was extremely embarrassing for me.

As a child, I was petite and because of the chronic steriod use, I gained a lot of weight. It started at that sensitive age of 12 -13 and I was very self-conscious of this weight gain. The same issue arose when I was in college. My steriods were increased over the summer break, and when I returned to school I was 5-10 pounds heavier. I heard my peers talking about how much weight I gained over summer break. I didn’t know how to deal with this, whether or not to let others know it was medication related. I found this to be very difficult to cope with.

My pupils were always uneven and when I was young, I was again very self-conscious of this defect. I worried that others would notice it and think I was odd.

Emotional Effect – I can’t remember emotions of my own when I was younger. I feel that it was because I didn’t understand what was happening. My emotions were always affected by my mother’s emotions. When I was first diagnosed, I only cried after I saw that my mother was crying. If my mother didn’t react, then I didn’t react.

I do remember being fearful in regards to my symptoms. I never had symptoms, initially. I saw floaters in my right eye several years after being diagnosed. I knew they were not right, but for whatever reason I was scared to tell my parents about them. I would initially be in denial, hoping they would go away. I don’t know why I was fearful and eventually I would tell.

As I grew older, I realized I was being led down the wrong path for treatment and became angry and started advocating for myself. I asked for a referral to another doctor, which eventually led me to Dr. Foster. When he first told me that I would be blind in a few years, if I didn’t move on with treatment and try immunomodulators, I was in shock as no one ever told me that before. I always heard, “it will burn out”. When Dr. Foster said, I needed immunomodulators, and I shook my head, no, out of fear. I was fearful of immunomodulators, thinking of them in terms of chemotherapy for treating cancer. I did a lot of reading and realized that they are safer than using steriods chronically. Unfortunately, I made my decision too late and suffered more structural damage to the eye. It took a while for me to internalize that this is a vision-robbing disease and prompt treatment is needed as, again, for ten years, I was told, “it would burn out”.

The last comment on emotional effect is a feeling of frustration by mother’s eternal optimism. I would try to vent to my Mom, regarding something going on with my eye, in hopes of sympathy. Unfortunately, my Mom would and still does say, “oh hunny, don’t worry about it, you’ll never go blind or you’ll be fine”. It’s now a standing joke and I’ve replaced the frustration with humor. However, I would still find emotional support, instead of optimism, more helpful to ease the pains of uveitis.

Loss of Vision and lack of Depth Perception – I was right eye dependent by the time I was diagnosed and never even noticed the vision loss in my left eye. I don’t remember what it was ever like to be binocular and have depth perception, so I’ve never miss it. I am grateful for what vision I do have and I don’t feel resentful that I couldn’t do certain things because of my vision.

In retrospect, as an adult with uveitis since my childhood, I don’t consider myself to be different from others because of having uveitis. I don’t think of my chronic illness of uveitis everyday nor weekly. Being in remission, helps to let go of the “what ifs”. I sometimes worry about loosing the vision in my only good eye from trauma or glaucoma, but I don’t dwell on it. My uveitis is a part of my life now. I often think that having grown up with it, I may even feel a void without it.

In thinking about what would have made my experience better, I would have to say, help in those aforementioned areas that I found difficult to cope with and to have had my feelings validated by my parents when I wanted to vent.

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