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Handle with Care
Raises Awareness about OI

The OI Foundation is pleased that Jodi Picoult’s book Handle with Care has made more people aware of the rare, fragile bone condition -- osteogenesis imperfecta (OI). Approximately 50,000 people and their families are affected by OI in the United States.

People who have osteogenesis imperfecta (OI) cope with a life long medical condition. OI ranges from a mild form that causes fragile bones but few obvious symptoms to a form that usually causes death shortly after birth. It is caused by an error or mutation on a gene. OI affects many parts of the body including bones, lungs, muscles, hearing, teeth and overall height. The child in this story has OI Type III which is considered a severe form. People with this form are usually less than 4’ tall as adults.

Living well with OI requires expert medical care, a supportive family and accommodations in the person’s physical environment. Infancy and childhood are especially challenging times. The frequency of broken bones usually diminishes during the late teens and young adult years. OI does not affect a person’s ability to think and learn. Many children who have OI are excellent students and adults pursue careers in many fields, raise families of their own, and participate in their communities.

Treatments for OI focus on reducing the number of fractures, maximizing mobility and promoting general health. Physical therapy and activities like swimming are important. Bones that are severely curved and breaks to major bones are treated by surgically inserting rods to provide an internal splint for the bone. Medicines developed to treat other bone diseases such as osteoporosis are being studied as possible treatments for OI.

Many parents who have a child with OI are concerned about being accused of child abuse. When a child has OI, the seriousness of a fracture is often much worse than the apparent cause. Child abuse allegations most often arise before a child is diagnosed.

Handle with Care is about one group of characters’ response to a series of serious events and should not be taken as representative of all OI families. Despite the challenges, many families affected by OI are successful managing the condition and coping with the strains. In-person, and on-line support groups offer parents and siblings the emotional support they need.

The OI Foundation exists to help. Its volunteers and staff work to:

  • Offer on-line, interactive communities and a chat room through its website
  • Hold support group gatherings across the country
  • Provide information on medical and practical topics in print and on its website
  • Support and promote research
  • Develop a Linked Clinical Research Center program to gather information about OI and its treatment and study how to improve care across the life span

Show your support for people with OI and the work of the OI Foundation by purchasing an Unbreakable Spirit wristband.

To read a high school junior’s comments on life with OI please read Allie’s Unbreakable Spirit on the OI Stories section of this website.

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