In the United States, any disease or disorder that affects fewer than 200,000 people is classified as rare. OI is a rare disorder. For this reason, most physicians see very few people who have OI during their careers. A great deal has been learned about OI in the last 10 years. Treatments have been improved and new treatments are on the horizon. Today, most of the babies born with OI have a good chance of leading independent, successful, and satisfying lives. The following list of myths describes some of the most common misinformation about OI.

MYTH:  A baby with OI should always be carried on a pillow and discouraged from moving.
FACT: Although there are handling techniques and precautions, it is in the child’s best interest to be held and touched and encouraged to explore independent movement to the greatest extent possible. Immobility increases bone loss and decreases muscle mass, leading to weakness, bone fragility, and more fractures.
MYTH:  Fractures caused by OI can be easily distinguished from those caused by child abuse.
FACT: Children with OI can have all types of fractures, including but not limited to spiral, rib, skull, incomplete, and displaced fractures. Distinguishing OI from child abuse requires a thorough assessment by a medical professional who is familiar with the full range of OI characteristics.
MYTH:  OI only affects the bones.
FACT: Though fragile bones are the hallmark of OI, many parts of the body are affected by OI. Skeletal features include fragile bones, bone deformity, loose joints, and short stature. Non-skeletal symptoms affect the heart, skin, blood vessels, muscles, tendons, internal organs, and eyes. In addition, breathing problems, hearing loss, excessive perspiration and brittle teeth are common.
MYTH:  OI is a childhood disorder; people grow out of it by their teens.
FACT: OI is a genetic disorder that is present throughout a person’s lifetime.  Many people with OI have fewer fractures after puberty when growth stops, but the genetic difference remains. Fractures and other complications occur throughout the lifespan and can increase again after menopause in women and after age 60 in men. Non-skeletal problems can be serious.
MYTH:  People with OI are diagnosed at birth.
FACT: Although present from conception, OI can be diagnosed at many different ages from birth into adulthood. The most severe forms are usually diagnosed at birth or shortly after. Other forms may not be diagnosed until the child has a series of broken bones or an adult has unusually low bone density. OI Type I, the most common and mildest form of OI, is rarely diagnosed at birth.
MYTH:  Everyone who has OI is shorter than average, has blue sclera (whites of the eyes), and uses a wheelchair.
FACT: The appearance of people with OI varies considerably. Although many people with OI are short-statured, people with milder forms may be of near-average height and have no obvious symptoms of OI. About 50 percent of people with OI have tinted sclera that can range in color from nearly white to dark blue or gray. People with OI also have variable mobility, ranging from independent walking to full-time wheelchair use.
MYTH:  People who have OI cannot have children.
FACT: OI does not affect fertility. Many men and women who have OI have children. Some women who have OI may experience pregnancy complications due to skeletal problems. It is important that all young people with OI receive information about their condition and about reproductive health.
MYTH:  All children of a parent who has OI will have OI.
FACT: The majority of people with OI have a dominant mutation. When one parent has a dominantly inherited type of OI, there is a 50 percent chance with each pregnancy that the child will have OI. There is a 50 percent chance that the child will not have OI.

Based on the OI Foundation publication Introduction to Osteogenesis Imperfecta: A Guide for Medical Professionals, Individuals and Families Affected by OI. Dr. Michael Bober, A.I. duPont Hospital for Children, editor, 2013.

Page updated August, 2015.