Tuesday, December 7, 2010

Brittle Bone Syndrome - Definition & Testimonies

Brittle bone disease is more commonly known as osteogenesis imperfecta (OI). It is a rare, usually inherited disorder that causes bones to break easily due to the body’s low production of collagen. There are six different types of brittle bone disease. The last two types, Type V and Type VI have been recently identified, and many articles refer to only four different types. The type of brittle bone disease indicates the degree to which the condition may impact one’s life. While some people are severely affected by brittle bone disease, others are able to live a relatively normal life.
Low levels of collagen characterize Type I brittle bone disease. This type is the most frequently occurring and the least severe. Bones are likely to break easily before the onset of puberty. As well, those with Type I are prone to scoliosis, extreme curvature of the spine, and may need to wear a brace as teenagers to correct the curve.

Those with Type I brittle bone disease may also have poor muscle tone, be subject to early loss of hearing, and may show discoloration in the whites of their eyes. Joints may be loosened, causing some lack of coordination, resulting in easier breakage.
Type II brittle bone disease is extremely severe, with most affected children dying before age one. The bones are usually severely deformed and lung development is not normal. Respiratory infections are the primary cause of death in this type.
Type III, conversely, allows the body to produce enough collagen, but the collagen is of poorer quality. This type of brittle bone disease is progressive, with few symptoms shown in babies. As the child ages however, symptoms like those of Type I begin to emerge. Generally, severity increases with age creating significant deformity and disability. People with Type III may have a normal lifespan, but their life will be significantly impacted by progression of the disease.
Type IV brittle bone disease is also characterized by poor quality collagen but tends to be a milder form. Bone breakage is common before adolescence, like in Type I. In fact the disease follows an almost identical course to Type I. The differentiation is that Type I is caused by insufficient collagen, while Type IV is caused by sufficient collagen of poor quality.
Type V and Type VI are used to describe the way the bones develop, and are both basically subsets of Type IV. Type V brittle bone disease usually causes the bones to resemble meshing or webs. These imperfections result in easier breakage. In Type VI brittle bone disease, the bones appear to be scaled.
Brittle bone disease has no cure, so treatment aims toward reducing breakages and deformation. In Type I and Type IV, the bones appear to be more vulnerable to breakage during growth spurts, and breakages occur with even the simplest of injuries. Physical therapists work with children to help them build muscle tone to protect bones. Some patients undergo surgery to fuse the spine, which may help with posture and reduce curvature. However, bones are often so fragile that this surgery is quite risky.

STORIES OF PEOPLE EXPERIENCING THE DISEASE....any advice for these people?

Does anyone know of any cases of OI in infants that have no known genetic links to the parents? i.e. idiopathic or spontaneous OI.
Child protection services are creating havoc for parents rushing to judgment with charges of child abuse. Parents need help in self defense against these government agents who are destroying their families and their lives.
If anybody out there has been taken to court by Social Services with criminal charges and have been judged innocent, please post details of your cases for reference by others caught up in that abusive system. The government agents don't care. They are like a dog with a bone, focused only on what they want and on what they believe, and don't care if they send innocent parents to jail and destroy families. People need all the help they can get to fight for their freedom.
- anon127466
We found out that our daughter had OI when she was about four years old. She has type 1 OI. She was four months old when when it started. Her upper arm was broken in three places, then at the age of two she broke her other arm in three places.
Again when she was three, she broke the right arm for the second time in three places by stopping her fall from a couch.
Social services was at our door for two and half years investigating for child abuse then she again broke her left arm at the age of five from playing on the monkey bars at school. She would scream in pain at night because her joints hurt.
When the doctors at children's finally told us her condition, it answered our concerns but gave us new fears to face and more questions on how to deal with her condition. She is now turning 10 years old.
- anon119414
I have a female friend whose bones in her feet continually break for no apparent reason. Why?
- anon111151

I just wanted to know a bit about brittle bones. my sister of 19 has just had a baby boy with brittle bones type 3. none of our families have had it. He's not even a week old and only god knows how many bones he has broken. Can anyone explain to me if he's going to be all right and have a normal life or does anyone know of any flims i can watch about a baby with type 3 brittle bones? please someone reply back to me. i haven't stopped crying, thinking about my sister and her baby son.
- anon45802
My friend's two month baby has a broken arm and test shown about eight other broken bones that have healed and after reading this article, we are sure it's a brittle bone disease. all other symptoms add up with it. She has taken her baby numerous times to the pediatrician, questioning all of this and nothing was done. Now with proof of the broken bones she has lost her baby to a family member until a genetic doctor calls (1-2 weeks). I just think its so sad what you have to go through when you were trying to be a good parent in the first place! The baby needs to be looked at now, not two weeks from now, and no one seems to care. They just look at the mother like she's a criminal!
- anon45661
My older cousin had a little boy in July of this year. since he was born there hasn't been something right. He won't sleep on his back and hates being cradled like a normal baby. Instead he only settles if you lie him either on your chest/tummy or have him on your shoulder with his head resting on your shoulder.
A few weeks ago a friends child accidentually hit him with a toy and he was taken to hospital as his nose was bleeding but they said he was fine. A few days later he was rushed to hospital as he was bringing up blood. They did X rays and CT scans but nothing came back. Eventually he settled and he came home. Still he had problems with settling, winding and feeding. In the last few weeks he has been bruising when you handle him, even when he just sits in your arms/lap for a feed. He went for an X-ray this week and the doctors have said he has broken his ribs in numerous places, but all he has done since he was born is sleep and be fed - is it possible he has brittle bone disease?
- anon43936
I have a friend who has baby who is five weeks old. My friend just found out that he has broken both his arms and some ribs and the parents do not know why and can't work out how it happened. can this be a case of brittle bone disease?
- anon43241
My cousin had a baby girl yesterday morning and the doctors had been telling her all along that something wasn't right. It turns out that the baby (Grace) has a form of dwarfism and has been diagnosed with type 3 brittle bone disease. They said she may not make it. I'm just trying to find out any information I can about this disease.
- anon39755
Is brittlebone disease ever associated with extreme dental issues? My son has tremendous issues with his teeth ....cavities, fillings that fall out, chips, etc. He also has frequent broken bones and injuries... His dentist has indicated that his oral hygiene is actually quite good, so he thinks there may be more to this condition.
- anon34874

information found at: http://www.wisegeek.com/what-is-brittle-bone-disease.htm

No comments: