It’s supposed to be a routine interview to promote Twisted Sister‘s upcoming ‘A Twisted Christmas Holiday Extravaganza‘ show at the Best Buy Theater on Dec. 17, but the conversation has shifted focus. Noisecreep is on the phone with guitarist Jay Jay French when he starts telling us about his daughter, Samantha, and her battle with a debilitating eye disease.
“When my daughter was six, she had a routine eye exam at school and they found something irregular in her test. They couldn’t figure it out, so we went to a specialist and he diagnosed her with uveitis. I had never heard of it, but it’s an autoimmune disease which is an inflammation of the middle layer of the eye, also known as the uvea.
“It’s been described like having arthritis in the eye. If you could imagine arthritis like having your joints being attacked by cells that think they are defending against something that isn’t there, so they become inflamed trying to ward off something. In my daughter’s case, the cells think there is something on her eyes, so they attack her uvea, and attach themselves. When too many cells attach themselves to her uvea it can eventually cause glaucoma and permanent blindness,” says French, a founding member of Twisted Sister.
Noisecreep asked the guitarist if Samantha has any issues with her sight. “Luckily, my daughter’s condition was diagnosed early enough where we helped preserve her sight, but not without the trauma of her enduring, so far, 11 years of heavy immunosuppressant drugs. It can open you up to other health problems when you are on those.
“She’s on her sixth round of immunosuppressant treatment right now, and the key is if you can go into remission and the inflammation stops, they’ll take you off the drugs to see if your body has finally adapted. She’s currently 14 months into that part of the process.”
Most musicians we cover on Noisecreep don’t have the benefits of health coverage, but French’s daughter was lucky. “One of the drugs my daughter was on, Remicade, cost 20K a dose. She took 12 doses of that. Her mother is a music industry executive. She actually runs Sony Music Publishing in England and her insurance covered 99% of the cost of the drugs. We’ve been fortunate. I don’t know how people without good insurance do it. If you’re poor, or don’t have great insurance, if you tell them a drug treatment costs 6K, you might as well tell them that it costs 12K. Hell, it might as well cost a million dollars! It’s not realistic for poor, working class families.”
In the past few years, French has been an outspoken voice for the uveitis awareness cause. “I started something called ‘The Pinkburst Project’ which was an auction including custom-made musical equipment made specifically to raise money for The Ocular Immunology and Uveitis Foundation. We ended up raising over 135K for the foundation through that auction alone. We still have a lot of work to do.”
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