Copyright 2009 by Judy K. Johnson All rights reserved. No part of this book may be used without written permission, except in the case of brief quotations embodied in critical articles or review.
The following general information is taken directly from the official website of the Osteogenesis Imperfecta Foundation: www.OIF.org Please contact this organization for detailed or updated information or support.
Osteogenesis imperfecta (OI) is a genetic disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.” A person is born with this disorder and is affected throughout his or her life time. • In addition to fractures people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, dentinogenesis imperfecta (brittle teeth), and short stature. Restrictive pulmonary disease occurs in more severely affected people. • OI is caused by an error called a mutation on a gene that affects the body’s production of the collagen found in bones, and other tissues. It is not caused by too little calcium or poor nutrition. • OI is variable with 8 different types described in medical literature. • The types range in severity from a lethal form to a milder form with few visible symptoms. • The specific medical problems a person will encounter will depend on the degree of severity. • A person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime.
The number of Americans affected with OI is thought to be 25,00050,000. • The range is so wide because mild OI often goes undiagnosed.
Approximately 35% of children with OI are born into a family with no family history of OI. Most often this is due to a new mutation to a gene and not by anything the parents did before or during pregnancy. Genetic testing is available to confirm a diagnosis of OI through collagen or gene analysis. The characteristic features of OI vary greatly from person to person, even among people with the same type of OI, and even within the same family. Not all characteristics are evident in each person. The OI type descriptions provide general information about how severe the symptoms probably will be. Health issues frequently seen in children and adults who have OI include: • Short stature • Weak tissues, fragile skin, muscle weakness, and loose joints • Bleeding, easy bruising, frequent nosebleeds and in a small number of people heavy bleeding from injuries • Hearing loss may begin in childhood and affects approximately 50% of adults • Breathing problems, higher incidence of asthma plus risk for other lung problems • Curvature of the spine •
Physical therapy and safe exercise including 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 canes, walkers, or wheelchairs and other equipment or aids for independence may be needed to compensate for weakness or short stature.
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At this time, there is no cure.
Walk-N-Wheel Events Making Strides for Better Bones A nationwide network of volunteer walkn-wheel fundraising events to fight the brittle bone disorder known as osteogenesis imperfecta (OI). Proceeds from these events benefit the Osteogenesis Imperfecta Foundation. Please support the walk-n-wheel in your area, or even consider launching one of your own! Fun with Family A variety of activities for kids and adults to enjoy. Local activities may include music, face painting, sand art, tae kwon do demonstrations, carnival games, food, and/or other activities to keep everyone entertained. Fitness Each participant chooses the number of laps they will walk or wheel. Helping Others You and your family will be acting together to improve the lives of people in your community and throughout the nation who live with this painful brittle bone disorder.
Daniel Wiederhold and his mother, Debbie live with their family in Pfugerville, Texas. Debbie is known for her tireless local participation in the Austin, Texas, Parent To Parent Organization which is committed to improving the lives of Texas children who have disabilities, chronic conditions, and/or special health care needs by empowering family advocates with parent to parent support, resources and education. In 2009, Debbie through the Texas Parent To Parent Organization provided praiseworthy leadership for their fundfaiser called the "Second Annual Central Texas Walk-nRoll" modeled after an O.I. Foundation format. This walk benefited both the Texas Parent To Parent Organization and the National Ostenoenesis Imperfecta Foundation. The event included a one mile walk, with people on foot, skates and bicycles, in wagons, and wheelchairs. The event promoted even more fun with games for kids, followed by pizza, cake and ice cream. Additionally, some great donated prizes were raffled off. This event promises to become a much awaited fun event every year well known for its successes in promoting important Osteogenesis Imperfecta programs. See the TxP2P website, txp2p.org for more ongoing details of this organization..
For more children's books with a theme of "Thoughtfulness" for children with disabilities visit to the author's website: www.ThoughtfulChildrensBooks.com