“If sharing my story helps even one person receive an earlier diagnosis, feel less alone, or find hope, then my voice has made a difference,” Leena (dx 2008) says.
“Scleroderma took an automatic permanent pause to my dreams,” says Leena, who lives in Singapore. But what followed that pause wasn’t an ending. It became, in her words, “a 360° turn” toward courage she never knew she had.
“Apart from the skin involvement, I was experiencing frequent refluxes and palpitations. I also had Raynaud’s syndrome,” Leena says. She was diagnosed in September 2008, after her gynecologist noticed changes in her skin color and tightness.
“It changed my lifestyle completely,” Leena says. With little support available in Singapore at the time, she learned “the hard way” what it meant to live with a visible illness. “I had to accept glares and cynical conversation when I took a seat in packed public transport,” she says. “Or even a cough to catch my breathe is being judged!” She gave up dancing and swimming, and eventually left her job as a phlebotomist, unable to keep pace with the demands of local hospitals.
“I lost all the freedom I’ve had on my productive and active life,” she says. “But as life goes on, it has proven to give me courage I never thought I had. The disease indeed gave me new life lessons and taught me to take things slow.”
Today, she’s grateful for what it brought her in return: “I was able to meet a new community that is strong and preserves.”
“The reason I shared my stories in the OutsideIn Podcast is because I am bringing awareness in my Malay community here in Singapore about Autoimmune Diseases,” Leena explains. As a founder of Autoimmune Muslims Singapore, she’s made space for rare diseases in that conversation, including scleroderma.
“Research is the ultimate sign of hope for the scleroderma community,” Leena says. “Every medication we take today exists because someone supported research yesterday. By continuing to push for answers, we aren’t just managing a disease—we are reclaiming our futures.”
We’re deeply grateful to Leena for sharing her story and for the advocacy she carries into her community every day.
