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Fair Woodland student speaks on grand stage
Shane Weiner discussed life with psoriatic arthritis at NYC gala
When 13-year-old Shane Weiner stood at a lectern in New York City and spoke to some 300 people — many of them medical professionals — about the difficulties of living with psoriatic arthritis, the Woodland Middle School eighth-grader said he felt no fear.
In fact, it was quite the opposite. “I think it’s pretty fun to speak on a stage,” said Shane, now 14. “As long as you meet your goal and influence somebody in the crowd, I think you’ve done your job. There’s nothing to be scared of.”
Shane, as the youth ambassador for the National Psoriasis Foundation, spoke at the organization’s Commit to Cure Gala at the Tribeca Rooftop in Manhattan on Oct. 29.
The disease, a combination of psoriasis and arthritis, causes severe swelling of fingers and toes, stiffness and throbbing joints, and a reduced range of motion.
In his speech, Shane detailed how the disease has shaped his childhood. He was 11 months old, he explained, when he first experienced symptoms. “One day I had normal hands and fingernails, just like any other baby,” he said. “And almost overnight, my nails were corrugated and yellow, while my fingers were red swollen sausages.”
Diagnosed with psoriatic arthritis nine months later, doctors have told the Weiners that he is the youngest patient to ever have the disease. According to the NPF, the disease most commonly appears in people between ages 30 and 50.
While various medications stabilize the disease, Shane explained the hardships he’s faced, including being the victim of taunting by his classmates.
But what’s made life easier for him, he said, is his passion for Legos. Last January, Shane’s bar mitzvah featured a carefully arranged display of several Lego sets he built, most of which comprised thousands of pieces. The display centerpiece, a Lego Taj Mahal, was 6,000 pieces.
The toy, Shane explained in his speech, has greatly benefited his dexterity. “I really do believe that starting to build Legos at 5 years old,” he said, “has been the reason my hands work the way they do, in spite of my arthritis.”
The gala featured an auction to raise funds for the NPF, and appropriately, Shane lent a 3,000-piece Lego Parisian restaurant he built. It sold for $1,200.
