It is World Awareness Day for Rare Diseases. Vic had Osteogenesis Imperfecta. A very rare and horrible disease. I salute you precious Vic for the incredibly brave battle you fought. I honour your journey.

Always in my heart.

Mommy

Hi, I’m Sierra, and I’m going to explain to you what life is like living with a rare disease called osteogenesis imperfecta, more commonly known as brittle bone disease.

Osteogenesis imperfecta (OI) or Brittle Bone Disease is a complicated, variable and rare disorder. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI.

Medical characteristics & issues related with OI include:

  • Fractures
  • Bone deformity, and bone pain
  • Short stature.
  • Spine curves.
  • Low Bone Density.
  • Loose joints, ligament laxity and muscle weakness are common.
  • Distinctive features of the skull including late closing fontanels, and head circumference greater than average.
  • Hearing loss may begin in the early 20s and by middle age is present in more than 50% of people with OI.
  • Brittle teeth (called dentinogenesis imperfecta or DI) are seen in 50% of people who have OI
  • Respiratory problems including asthma; may be aggravated by chest wall…

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