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 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 spiral, rib, skull, incomplete, and displaced fractures. Distinguishing OI fractures 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, other medical problems, including loose joints, early hearing loss, brittle teeth, respiratory problems, and easy bruising are also part of the disorder.

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. The frequency of fractures may decrease after puberty, when growth stops. Later, it may increase again in women with the onset of menopause and in men due to age-related changes in their endocrine system.

Myth:

People with OI are diagnosed at birth.

Fact:

OI can be diagnosed at different times. It can be discovered during pregnancy or at birth. It can be discovered when the infant, toddler or young child has unexplained broken bones or later in life when an adult has unusually low bone density for his or her age. OI Type I, the most common and mildest form of OI, is rarely diagnosed at birth unless a parent has OI. Some very mild cases are only diagnosed when a person has a child with OI Type I, and a review of the person’s medical history reveals a pattern of fractures and other features of OI. OI is primarily a clinical diagnosis. Collagen studies and/or DNA analysis can identify the mutation and confirm the clinical diagnosis. Negative results on these tests do not eliminate the diagnosis of OI.

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 reproductive health.

Myth:

All children of a parent who has OI will have OI.

Fact:

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. In the rare instances where OI is transmitted as a recessive trait, parents are healthy carriers and their children have a 25 percent chance to be affected and a 50 percent chance to be carriers.