Samantha’s story

I’ll start off by making myself clear – having Chronic Bilateral Uveitis has not by any definition been easy for me, but I am one of the luckier ones.

My case was caught and treated quickly, I have not lost vision in either of my eyes, I have been in remission three times and there is now only about a 2% chance that I will go blind due to Uveitis.

That being said, the last 12 years of my life, which, as an 18 year-old, has been the majority of my life, have been scattered with frequent appointments with one of the eight doctors that have treated me over the years along with six different rounds of aggressive chemotherapy drugs. Looking back on it all now, it is almost unbelievable to think of what I’ve gone through.

I was diagnosed with Uveitis at the age of six when, during a routine school-mandated physical, the general pediatrician who was examining me found something “weird” in my eyes, and sent a note home to my parents suggesting we see an optometrist. Due to the fact that both of my parents have terrible eyesight, they assumed that their genes were kicking in early and I needed a pair of mild prescription glasses. But upon seeing a family friend who worked in an eyeglass store, it became clear that glasses were not what I needed and I was taken to another family friend, Dr. Brian Herschorn (who normally specializes in vision correction surgery).

My memories of that day aren’t exactly clear, but what I do remember is this: Dr. Herschorn took one look at my eyes with a slit-lamp, turned to my parents who were both standing in the corner and told them they might want to sit down. It was then that he explained that I had a chronic autoimmune disease that would likely lead to Rheumatoid Arthritis and possibly a number of other afflictions such as Psoriasis and Chron’s Disease. He gave me steroid eye drops and referred us to Dr. Stephen Foster who was, at the time, at Massachusetts Eye and Ear Infirmary in Cambridge, Mass.

It has been Dr. Foster who has guided myself and my parents through the last 12 years with as little major crises as possible, but the fact that we had to see him at that time didn’t sit too well with my mother. She didn’t want to believe that her only child had a chronic disease she had never heard of and would have to go on a chemotherapy drug known as Methotrexate, so instead she denied it.

Yes, I was given my medication, but she decided that it must have been an allergy to dairy or gluten, so not only did I have an eye disease at the age of six, but I also had a mother who wouldn’t let me eat pizza or chocolate! A year went by, though, and it became apparent that depriving me of sweets wasn’t going to magically cure me, and the treatments persisted. First only with Methotrexate, then with an added dosage of a drug called Cyclosporin, then both of those with an increased dose of Methotrexate that was administered via injection.

Let me just add here that injections did NOT go down well with me at the time and every week, I would lock myself in my bathroom until I was lured out with the promise of extra TV time and a cookie. I guess something’s gotta give when you’re a kid stuck with a chronic disease, right?

At the age of 10, after four years of a treatment that my body was definitely starting to get tired of, I went into remission almost out of nowhere. I spent a glorious year medication free, finally able to go without explaining to my classmates why I was constantly getting ill (after all Methotrexate is an immuno-suppressant) and being able to live life like a normal child.

It didn’t last long, though, and the inflammation returned to both of my eyes just as quickly as it had gone. I was at that point, at the age of 12, faced with an ultimatum to try either Remicade or Humira – both drugs that featured my mortal enemy, the needle. After much debate between my parents, it was decided that Remicade would be my next step. I sat in an infusion centre in a hospital for four hours (one hour to prep, three to administer) whilst a severe immuno-suppressant drug dripped into my blood stream and made me feel delirious and nauseous. This feeling mixed with the Benadryl I was given before the dose started made me feel nothing short of dreadful.

Now here’s the thing about the particular infusion centre in which my doses were administered: it was a children’s cancer infusion centre. This meant that once every four weeks, I spent four hours in the same room as kids who were getting chemotherapy treatments and blood transfusions and it was at that point that despite all my frustration with my disease, I stopped complaining. After all, Remicade had once again put me in remission.

It wasn’t exactly all easy from there, though. Being as aggressive as it is, Remicade was responsible for getting me ill fairly consistently throughout my year and a half of being on it until in January of 2008, I came down with the flu three consecutive times. I was rushed to the hospital with a 103 degree fever and my mother swiftly decided I was to be taken off Remicade. Dr. Foster, it must be said, was never the biggest fan of this idea, but my health was at risk and nothing was going to stop my mom from never letting me have another infusion of Remicade.

I stayed in remission without the help of any medication until March of 2008 when my inflammation came back with a vengeance. My pupils were glued to the backs of my eyes due to all the Karatic Precipitates that had built up and I could barely see. I was put on a harsher course of steroid drops than ever before and was switched to CellCept – a medication that would never put me into remission, but would see me reasonably safely through the next two years. It was also at this time that I developed a stiffness in my knees that, although it has never been labeled JIA, shows all the signs.

Finally, last August I was put on Humira, a self-injected medication that I have to administer myself every other week. Humira has its downsides – the injection itself is extremely painful, it tires me out for at least 24 hours if not more and has a tendency to make me nauseous, but it’s put me in remission once again. I am now an Acting major at the Boston University College of Fine Arts in a programme that is extremely physically and emotionally trying and Humira injections pretty much put me out of commission every other Wednesday, but if there’s one thing the last 12 years have taught me, it’s that whining about it does nothing… except get you extra TV time and a cookie, but I think I’m a bit past that now.

Today, having Uveitis for me means having a disease that not many people have heard of. It means explaining to my teachers the same way I have done since my parents stopped talking to them for me that I have a disease that limits me due to the medication I take and that I am likely to get ill pretty frequently. It means that for at least one day every two weeks I don’t have the energy that I wish I did. It means making the people that love me worry about me, even when I tell them they shouldn’t. It means getting my flu shot in September the second they become available for the year and taking a Berocca tablet every morning even if I’m not feeling ill that day. It means worrying every day that the inflammation might come back and running off to see Dr. Foster whenever my eyes get bloodshot from something as mundane as over-wearing my contact lenses. But like I said in the beginning, I’m one of the lucky ones.

The fact that these things are all I have to worry about when I wake up in the morning is nothing compared to what some kids with Uveitis have to deal with. The way I see it, I don’t strive to work towards a cure for Uveitis for myself anymore; the main battle is over for me. I might even graduate from university in 2015 in permanent remission with nothing left but some scarring and stiff knees. Now it’s about all the kids who are struggling silently because they think they’re alone and can’t get the treatment that I got because there aren’t enough specialists. My struggle with Uveitis isn’t over, but at least the end is in sight. I want the same reality to come true for Olivia and others like her.

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