Working to dispel the notion that people with disabilities live depressing lives is Rachel Gross, an advocate, blogger, and entrepreneur from Plainview who happens to have a rare form of congenital muscular dystrophy called nemaline rod myopathy.
While the diagnosis leaves her wheelchair bound because her muscles are extremely weak, the 24-year-old remains quick-witted and passionate about beauty, fashion, advocating for people with disabilities, and everything in between. Through her website, Riizzyray.com, she’s recruited a group of young women with disabilities to mentor others in similar circumstances. And on her Instagram account, she offers makeup tips and sells uplifting merchandise, in addition to posting inspirational videos on TikTok.
“With my blog and shop, I hope that I can shed some light on what life is like living with a disability and to shut down some of the stigma surrounding it, because in all honesty, it isn’t so bad,” she wrote. “Having a disability isn’t all sad, dreary, and full of struggle. It can also be beautiful, and fun, and exciting!”
Caused by a gene mutation, nemaline rod myopathy has an estimated incidence of 1 in 50,000 individuals, according to the U.S. National Library of Medicine. While there are variations that impact people differently, in Gross’ case, she lives with her parents and relies on personal assistants to live independently.
But like any other 20-something-year-old, she is just trying to live her best life, sharing her story, and connecting with people.
“I hope this blog inspires you to live your best life, no matter the circumstances,” she wrote. “And I hope to encourage others with disabilities to never give up, even when things seem impossible — and don’t let anyone tell you ‘no!’”
For more health coverage, visit longislandpress.com/category/live-well