Osteogenesis Imperfecta (OI) also known as Brittle Bone Disease and Lobstein Syndrome: Osteogensis Imperfecta is a genetic bone disease characterized by bones which are weaker and that break easily. There are eight types of OI, and which type the child has dictates the severity of the symptoms. Children may also have a blue tint to the whites of their eyes and hearing loss due to weak bones in the inner ear. Children with OI generally have poor dental structure and loose joints. More severe forms of OI may include bowed legs and arms, kyphosis (hunched back) and/or scoliosis.
Possible complications: A person with mild OI may experience just a few fractures while those with the severe forms may have hundreds in a lifetime.
Treatment: Most treatment focuses on trying to prevent fractures while helping a child be as mobile as possible. Treatments include:
- Physical therapy and non impact exercise such as swimming
- Casts, splints or wraps for broken bones
- Braces to support legs, ankles, knees and wrists as needed
- Orthopedic surgery, often including implanting rods to support the long bones in arms or legs
- Medications to strengthen bones
- Mobility aids such as walkers or wheelchairs when needed.
Prognosis: The prognosis for this condition varies greatly depending on the severity of symptoms. For children with mild symptoms, life expectancy is not impacted. For children with more severe symptoms, their life expectancy may be shorter. Most people with OI however, lead very successful lives.
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Stories or Blogs from Families who have Parented a Child with Osteogenesis Imperfecta/Brittle Bone: