Woman with Osteogenesis Imperfecta Advocates for More Inclusive Education

 

22-year-old Ruchita Sahukari is currently studying Literature and Sociology at the Indira Gandhi National Open University (IGNOU). Her journey to pursuing her degree began with the assistance of non-governmental organizations (NGOs) like Amritavarshini. But education was not always easy for Ruchita to pursue. You see, Ruchita has osteogenesis imperfecta (OI), a rare genetic disorder characterized by brittle, easily-fractured bones. Because of her struggles growing up, shares ABP Live, Ruchita is now committed to ensuring that other children with rare conditions or disabilities have better, more inclusive educational settings. 

When she was growing up, none of the schools in Ruchita’s local area would admit her due to her sickness. She received a lot of her education at home, where her parents took care of her. Unfortunately, her parents were not always able to pursue medical care for Ruchita when her bones broke, due to financial issues. In addition to changing the educational system, Ruchita also hopes that sharing her story will inform more families in India about rare conditions so that they can be better managed and understood.

Right now, Ruchita is advocating for more inclusive educational environments in India. This means elevators, ramps, and other accessible infrastructure. She also hopes that schools will work to better learn about and understand rare conditions so that students do not feel isolated or excluded.

If you’d like to help Ruchita, you can sign her petition for change

About Osteogenesis Imperfecta (OI

Osteogenesis imperfecta (OI) refers to a group of rare genetic disorders characterized by easily broken bones. Altogether, there are four main types of OI: I, II, III, and IV. Each type can range in symptoms and severity, making OI a variable condition. COLA1A1 and COL1A2 gene mutations cause most cases of osteogenesis imperfecta. However, some cases result from spontaneous gene mutations. Symptoms do vary based on disease subtype; for example, those with OI type I have more mild symptoms, while type II is characterized as the most severe. You can learn more about osteogenesis imperfecta and its varied types and symptoms here, but these are some of the most common ones:

  • Bluish discoloration of the whites of the eyes (blue sclera)
  • Multiple bone fractures and/or malformations
  • Fragile skin
  • Underdeveloped lungs and/or respiratory distress
  • A triangular facial appearance
  • Short stature
  • Scoliosis
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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