Michele Norris spent much of her life searching for answers. She grew up in the 1970s, constantly in casts, breaking bones several times a year—most often wrists and ankles. Doctors suspected osteogenesis imperfecta (OI), a rare genetic disorder, but there was no formal diagnosis. “Back then, there wasn’t the financial support or advanced testing available to confirm it,” Michele recalled. “At one point, my doctors suspected child abuse because I broke bones so easily, until my school spoke up and ruled it out.”
A lack of financial support prompted Michele’s mother to grow into a skilled advocate, mastering the signs of fractures versus sprains and confidently steering her daughter’s care. “She always knew what to do,” Michele said.
By adulthood, Michele had lost count, estimating she sustained more than 200 fractures. She recalled some fractures worse than others—like breaking both her radius and ulna, and even her jaw, which had to be wired shut in second grade. “That was one of the toughest breaks I’ve ever had,” she said.
Despite the challenges, Michele found ways to adapt. She learned to write with both hands, developed an unusually high pain tolerance, and found a sense of belonging with other kids who had health challenges. Still, she often felt isolated. “I was bullied a lot for being a weakling,” she said. “It was hard growing up always on the sidelines.”
It wasn’t until age 48—after decades of pain, surgeries, and uncertainty—that Michele finally received a diagnosis: OI type V. “I cried like a baby when I found out,” she said. “It was devastating, but it was also the most validating moment of my life. For years, I had been told to lose weight or that nothing was wrong. To finally have an answer—it made my heart happy.”
Her joy eventually turned to anger as she reflected on years of misdiagnosis and missed opportunities for care—not only for herself, but for her mother and grandmother, who also lived with the same symptoms without answers. “I felt betrayed by the medical community,” she said. “But at least I had a name for what was happening to me.”
“What hurts the most is knowing my mom and grandmother went through the same struggles without knowing why. They deserved the validation I finally received.”
Michele underwent multiple surgeries and received treatments such as zoledronic acid (infusions to slow bone loss). But her bones remained fragile. In 2024 Michele shattered her shoulder and femur after fainting from heart problems tied to her mitochondrial disease.
After surgery, her hip was rotated the wrong way, leaving one leg shorter and twisted. Recovery was grueling, and to make matters worse, she received inadequate follow-up care. She was discharged from the hospital to a nursing home and then to a homeless shelter in a wheelchair—an experience she described as both shocking and dehumanizing. “I wasn’t just battling broken bones; I was fighting a system that didn’t seem to care whether I recovered,” she said.
Access to specialized care has been inconsistent throughout her life. Some emergency physicians recognized her OI immediately, noting the classic signs such as blue sclera. Others did not. “It’s like Russian roulette going into a hospital,” Michele said. “You never know if the doctor will understand your rare disease.”
Seeking better care, Michele moved from Tennessee to California in May 2025, where she found more knowledgeable providers and access to research studies. “The medical community is more proactive here,” she noted. “It makes a difference.”
Michele’s journey was shaped not only by medical challenges but also by resilience. She lost her mother and grandmother to complications of OI, and she faced her own frightening moments, including a devastating hip fracture that left her with lasting mobility issues.
Years earlier, in 2012, Michele was forced to stop working due to the relentless toll of fractures, arthritis, and a tibia injury.
Still, she refuses to give up.
She focuses on adapting her life: modifying her truck for accessibility, using assistive devices, and finding purpose in advocacy. “OI has helped me become more resilient in my mind,” she said. “You find ways to keep going.”
Her adventurous spirit remains, even though OI forced her to scale back. Just a few years ago, Michele was hiking the Appalachian Trail. She’s since reframed that experience, finding happiness in backyard walks. “You make exchanges,” Michele explained. “Gardening became my forest. You can still be happy—you have to find joy differently.”
Now in her 50s, Michele lives with OI, osteoporosis, mitochondrial myopathy, and ongoing fracture risk. She worries about hardware failure, bone loss, and future falls—but she also carries hope. “I wish more money would go into OI research,” she said. “We need awareness so doctors aren’t afraid of it, and so patients don’t go years without answers. Awareness is everything.”
Her advice to others with OI or rare disease is simple: advocate, educate, and hold on to hope. “Patients need to educate the public—it only takes a couple of minutes,” she said. “Doctors are busy, but we can help bridge that gap. Knowledge makes everything less scary.”
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