Hello I’m…
Kala. I’m 35 years old, mom to 1, and I have osteogenesis Imperfecta. Also known as brittle bone disease. I’m one of 3 in my family with this disease. It’s a rare disease that cause multiple fractures in adolescence, joint issues, bruising, mobility, and pain. There’s no active cure to this disease and there’s options for treatment as in physical therapy, pain management, roding surgery and corrective surgeries. If you would like to learn more or ask questions please feel free to contact me! #awareness #osteogenesisperfecta #brittlebonedisease #rarediseaseawareness #glassbones
Osteogenesis Imperfecta (OI), commonly referred to as brittle bone disease, is a genetic disorder characterized by fragile bones that break easily. This condition is caused by a defect in the gene responsible for producing collagen, which is essential for bone strength and structure. In individuals with OI, even minor impacts can lead to fractures, making daily life challenging. Social support and awareness are crucial, as many people are unaware of the realities of living with this condition. Treatment for Osteogenesis Imperfecta may include physical therapy to enhance mobility, pain management strategies to cope with discomfort, and surgical options such as rodding or corrective surgeries to reinforce weakened bones. These interventions can significantly improve the quality of life and help manage symptoms effectively. Raising awareness about OI is essential for early diagnosis and proper management of the disease. Advocating for increased research funding, community support, and education about this rare condition can make a difference in the lives of those affected. Connecting with organizations focused on rare diseases can also provide valuable resources and support for patients and families. Sharing personal stories, like Kala's, plays a vital role in fostering understanding and empathy in society.