What is Osteogenesis Imperfecta?

When I started this page back in 2014, the aim was to raise awareness of Osteogenesis Imperfecta, which is the disability I suffer from, so I'm going to give you some information of the condition and what you can do to help. 

What is Osteogenesis Imperfecta (OI)? 

Osteogenesis Imperfecta (OI) or sometimes commonly know as brittle bone disease, is a genetic condition characterised by bones that break easily, often without any known cause. It is a lifetime condition meaning the person, will be affected throughout their life. There is currently no cure for OI. The condition can vary quite drastically from person to person so a classification system has been to the describe the different type of OI, which is commonly used to diagnose, how severe a person is affected by OI. For example, a person may just have a few or as many several hundred fractures in their lifetime. 

What are the cause of the condition? 

OI is caused by a genetic mutation that affect the body's production of collagen, which can be found throughout the body, especially in a person's bones and tissue. 

What the types of OI? 

Although there are many different form these are the four most common. 

Type I (1) - This the mildest form of OI 

Type II (2) - Severe and usually lethal in the perineal period. 

Type III (3) - This type is considered progressive and deforming (this is the type I have) 

Type IV (4) This type is considered moderate, type IV can range in severity from relatively few fractures, as in OI Type I, to more severe form resembling OI Type II.

How does OI affect a person? 

As well as frequent fractured bones, people with OI often have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae (the white of the eyes), dentinogenesis imperfect (brittle bones) and short stature just to name the a few of the medical problems. 

How common is OI? 

Is it estimated that 1 in 15,000 in the UK have OI. 

Where can people go for help? 

Apart from the hospital which can obviously help with medical treatment, there is currently a charity set up in the UK for those affected by the condition. The Brittle Bones Society, provide vital support for those living with the condition. They provide grants for specialist equipment, such as wheelchair. They also provide local support group which is a a great opportunity of meeting other people with OI in your local area. Phone support is also something they can offer, the Brittle Bones Society have always been at the end of the phone when me and my family need support or advice. Events, the Brittle bones Society also hold a annual three day Conference and AMG. This is a chance to meet and socialise with others who have OI, hear talks from healthcare professionals, and to take part in forums and workshops. They also provide other events throughout the year, including patient days and youth events, to help children living with the condition. 

If you or somebody you know suffers from Osteogenesis Imperfecta, we highly recommended contacting the Brittle Bones Society, as they really do change lives. 

Of course as with any charity the Brittle Bones Society are always after vital funds to carry out the excellent work they do, if you would like to donate or fundraiser please click here to find out more information. 

Thank you for reading this, 
Love Jessica and Lottie xx 


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