WHAT IS UVEITIS?
In layman’s terms, uveitis is inflammation of the uvea—the middle section of
the eye. The third-leading cause of blindness among girls in the US, uveitis
is rare and incurable, but with early detection it can be treated. Because there
are no physical symptoms, it goes unnoticed by the patient until their vision is
impaired.
Jay Jay French’s daughter, Samantha, now 17, was diagnosed at age 6 during what
her father describes as “a very routine, rudimentary eye exam at school.” Further
examination was recommended, which led the family to the Massachusetts Eye
Research and Surgery Institution in Cambridge, where Samantha came under the
care of Dr. Stephen Foster. “MERSI specializes in inflammatory diseases, and Dr.
Foster is the leading specialist,” says French.
Uveitis is often associated with other medical conditions, including infection,
trauma, and autoimmune diseases such as rheumatoid arthritis—and particularly juvenile rheumatoid arthritis. In patients with the disease, the immune
system attacks what it mistakenly perceives as foreign bodies, resulting in severe
inflammation that must be treated with pain medication, steroids, and, in
extreme cases, potentially dangerous drugs. “Behind the uvea lie hundreds of
thousands of capillaries, the smallest capillaries in the body,” says French. “If
uveitis is not caught quickly, the immune system kills the lens and causes glaucoma and blindness. You can hold it back, and in some cases it goes away for
reasons that doctors cannot understand.”
According to French, who has immersed himself in learning about the disease,
little is known about uveitis. “It’s not a ‘sexy’ disease with hundreds of millions
of dollars in research. Lack of detection adds to our country’s medical costs.
As the parent of a child with a chronic disease, I know enough to explain to
people what they need to do. I also know enough to tell them that early detection is the key. If treated early, chances are that a person will have normal sight
for the rest of their life. Samantha is still in treatment and has preserved her
eyesight, but had the cellular damage not been diagnosed, she could have been
blind by now.”
For more information on uveitis, visit uveitis.org, uveitis.net, and the
Massachusetts Eye Research and Surgery Institution at mersi.us.
her while she was on medication. The two systemic drugs are cancer drugs—Methotrexate
and Remicade. They use drops to lower the
inflammation immediately and systemic
drugs to hold back inflammation. A certain
percentage of girls between 17 and 18 go into
remission, because the body’s immune system
develops and the body stops it. You take your
child to checkups every three, six, and nine
weeks, and you pray that the cells did not
come back. And then come the drops to pull
them back, and how many cells and floaters
are in the back of the eye, and with every step
backward, your heart sinks.
Methotrexate and Remicade are potentially
toxic, right?
Yes, absolutely. Methotrexate did not work.
Remicade is a wonderful drug with two
problems. First, it costs $20,000 a dose—
or $19,700 if you have insurance—and is
administered intravenously in a cancer ward.
Second, it lowers the immune system so much
that you get sick all the time. But it holds
back the inflammation. Samantha went to
New York-Presbyterian Hospital for a three-year period for the monitoring of possible
juvenile rheumatoid arthritis complications
that come with uveitis. But she would look
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around at kids with cancer and say, “They are
way worse off than me.” She went through
treatment, was clear for six months, and then
it came back with a vengeance and she had
to start on a new drug called CellCept. It’s
an organ-rejection drug that she took for
two or three years, and it held the inflammation back. Her vision is 20/20 now with
