Living with Osteogenesis Imperfecta: Parita’s Story
Parita is a security guard who has been diagnosed with Osteogenesis Imperfecta (OI), a rare genetic disease that causes brittle bones and frequent fractures. In this article, we will learn more about OI and Parita’s journey living with this condition.
What is Osteogenesis Imperfecta?
OI is a genetic disease that causes brittle bones and frequent fractures. It is a rare disease that affects people of all races and ethnicities. There is no definitive diagnostic test for OI, but it can be detected through genetic counseling and testing.
How to find out if someone has OI?
There are no symptoms to predict OI, but people with a family history of the disease are at higher risk of inheriting it. OI has different types depending on the severity of the disease, and classification depends on the underlying genetic defect.
Life with OI:
Parita first suffered a fracture at the age of three, which led to her diagnosis of OI. She has suffered from multiple fractures since then and has spent months bedridden after each fracture. Despite her struggles, she attended school and never let her condition define her. However, later in life, Parita developed progressive hearing loss, which is a possible manifestation of OI. She has been using hearing aids for over a decade, but no technology is currently helping her.
Adapting to a disability late in life:
Parita is now reassessing her life as a late-deaf adult. Adapting to a disability later in life can be very difficult, and it comes with some significant changes to one’s life. As someone who is now deaf, Parita has shifted to using technology to communicate, like mobile apps and work amenities. She is a strong advocate for accessibility and aims to raise awareness of how technology can aid people with disabilities.
People with OI and other chronic conditions need to seek out relatives and nearby communities for support. There are online communities around the world that can offer help, kindness, and stories. Seeking help at the right time and hearing from someone else who has had a similar experience can truly make one feel less alone.
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