Living with OI

OI is short for osteogenesis imperfecta. Osteogenesis imperfecta (OI) is a rare genetic disorder characterized by bones that break easily, often from little or no apparent cause. For us that have it, this is the only way of life that we know. It cannot be cured, and we’ve had it since birth.

There are four different types of O.I., each on different from the rest. They types are as follows.

Type I

Most common and mildest type of OI.

Bones fracture easily. Most fractures occur before puberty.

Normal or near-normal stature.

Loose joints and muscle weakness.

Sclera (whites of the eyes) usually have a blue, purple, or gray tint.

Triangular face.

Tendency toward spinal curvature.

Bone deformity absent or minimal.

Brittle teeth possible.

Hearing loss possible, often beginning in early 20s or 30s.

Collagen structure is normal, but the amount is less than normal.

Type II

Most severe form.

Frequently lethal at or shortly after birth, often due to respiratory problems.

Numerous fractures and severe bone deformity.

Small stature with underdeveloped lungs.

Tinted sclera.

Collagen improperly formed.

Type III

Bones fracture easily. Fractures often present at birth, and x-rays may reveal healed fractures that occurred before birth.

Short stature.

Sclera have a blue, purple, or gray tint.

Loose joints and poor muscle development in arms and legs.

Barrel-shaped rib cage.

Triangular face.

Spinal curvature.

Respiratory problems possible.

Bone deformity, often severe.

Brittle teeth possible.

Hearing loss possible.

Collagen improperly formed.

Type IV

Between Type I and Type III in severity.

Bones fracture easily. Most fractures occur before puberty.

Shorter than average stature.

Sclera are white or near-white (i.e. normal in color).

Mild to moderate bone deformity.

Tendency toward spinal curvature.

Barrel-shaped rib cage.

Triangular face.

Brittle teeth possible.

Hearing loss possible.

Collagen improperly formed.

These descriptions are just a short list, not all people with OI have all of the ‘symptoms’ listed. There are many more ‘symptoms’ possible for people with OI that are not listed.

There are two different tests that can be done to possibly diagnose a person with OI. These tests are biochemical (collagen) or molecular (DNA) tests that can help confirm a diagnosis of OI in some situations.

Other then our bones breaking easily, we are normal people. We have conversations, we make friends, we work it we’re able to, and we live life as best as we can.

Like I said, living with OI is the only life we know. Sometimes it may be difficult, but most have had so many breaks or fractures that we’re just used to it. When one happens, its just means we must adapt to our ‘being hurt’ routine, but other then that continue with life as normal.

We do what we enjoy doing, and relies that there are limitations on things we can safely do (like bungee jumping is a huge NO). We’ve also learned to adapt many everyday activities to fit our lifestyles.

Having OI is just something that you learn to live with, and accept each break or fracture as a normal thing. There is nothing that can be done to prevent them; you can’t live your life in fear of getting hurt.

For those that don’t quite understand how easily someone with OI can get hurt, let me give a few examples. I first must stress again that you can’t live in fear of getting hurt, and relies that it will and could happen no matter what. You may try to stay away from certain activities, just out of common sense (like bungee jumping), but you can’t just sit and never ever move for fear you might break. Having OI is just something you live with, because you have to, and to you having it is normal.

You cough hard or receive a bear hug and break your ribs. A kitten jumps on your ankle or your trip on your way to the bathroom and you break an ankle. You hit your wrist against something and now it’s broke. You fall from a standing position and shatter your arm. It’s that easy for someone with OI to break or fracture a bone or a few of them.

We don’t want your pity, just your understanding. Understand that we are the same, even if we may look a little different or we’re hurt as often in the couple years you’ve known us then you and all your friends combined have been in your whole life. Understand we’re not ‘faking it’ for attention. Understand that it is possible that a problem exists that you don’t know about because it’s not common. Understand that we want to help out or do what you ask, but it just might take a little bit longer for us to keep up. Understand that we wish we could reach something on that high shelf but we just can’t so we might need your help or a stepstool. Understand that we might not hear what you said the first time, and we’re not ignoring you or being rude by asking you to repeat it.

Understand that we’re just normal people, with a tiny difference that no one can help. Understand and accept us, but don’t pity us. Pity doesn’t do anything except make you look like you think your better then us. Just be understanding, and accept that there are something in this world that you cannot change.