Imagine having brittle bones… it basically means that they are extremely fragile and can break easily. These breakages can happen with no apparent cause and it prevents hundreds of people from living a normal life. It is a term that is commonly associated with the genetic disorder Osteogenesis imperfecta…
For those who aren’t familiar with this condition, osteogenesis imperfecta (OI) or brittle bone disease is a genetic disorder identified by extremely fragile and easily fractured bones caused by a defect in the genes and is inherited by a parent . It can lead to a person having as many as a hundred fractures in their lifetime depending on the severity.
One in every 20.000 births worldwide are affected by Osteogenesis Imperfecta…
About 25 percent of all children with OI have no family history of the disorder…
Both genders have an equal possibility of being affected by OI…
There are no treatments available to cure OI, nor to prevent most of its complication…
Depending on the severity of the condition, a person can have as many as 40 to 100 fractures before the end of puberty…
But what is being done for people with OI?
As already mentioned before, osteogenesis imperfect cannot be cured or be prevented as it is a genetic disorder. Therefore, treatments are mainly aimed at preventing further complications and reducing the symptoms of OI. For example rodding is a surgical procedure in which a metal rod is implanted within a bone, usually the long bones of the thigh and leg, which can reduce repeated fractures. This surgery is commonly performed when repeated fractures of the leg bones are interfering with a child’s ability to walk.
Adopting a nutritional and healthy lifestyle that includes no smoking, drinking or any other harmful substances as well as exercise is also commonly encouraged. For example, swimming and walking is often an exercise that is advised, but for those who are in a more severe condition require a wheelchair.
Lastly, there are number of alternative treatments such as acupuncture, naturopathic therapies, hypnosis, relaxation training, visual imagery, and biofeedback have all been used to try to decrease the constant pain of fractures.
Watch the video below for more information on OI and understanding of how people’s lives are affected by the disorder:
A great number of people believe that their disorder is not well recognised, especially for those where it isn’t instantly visible and they might not end up getting the best treatment. It is an issue starting to be recognised by numerous companies. However…
It’s not only OI, there are hundreds of rare diseases that affect people worldwide…
They might not be the most common disease affecting people worldwide, the majority will most likely not be familiar with most of them. However, that definitely does not make these diseases insignificant, there are still a great number of people who suffer from these disorders. There are a number of organisations that look into rare diseases such as Osteogenesis imperfecta. There are groups that look into OI specifically and there are groups that look into rare diseases as a whole, but each makes a contribution to spread awareness for those various conditions in order to make sure patients are able to get the assistance they need.
But what can you do…?
Support the organisations that look into rare diseases such as OI and many others! Every single person’s support is vital in spreading awareness for these conditions.
Look into the groups behind the research of genetic disorders and educate yourself or others.
And of course DONATE. We have a chance of supporting those who can’t support themselves. Even though it only affects a small group of people doesn’t make it insignificant.
Be the voice for those who can’t do it by themselves
Please check out these links to find out more: