Periventricular Leukomalacia (PVL)
Periventricular Leukomalacia is long and difficult to say.
Unfortunately, Mum and Dad can rattle it off without thinking. Usually, we refer to it by it's shorter name - PVL. Periventricular Leukomalacia (PVL) is the official diagnosis for my brain damage.
Unfortunately, Mum and Dad can rattle it off without thinking. Usually, we refer to it by it's shorter name - PVL. Periventricular Leukomalacia (PVL) is the official diagnosis for my brain damage.
Usually, we refer to it by it's shorter name - PVL. Periventricular Leukomalacia (PVL) is the official diagnosis for my brain damage. When I was diagnosed, we didn't know much about PVL. We know a little more now.
My PVL has led to my vision impairment. In very general terms, it seems that PVL stops the messages between our eyes and our brains connecting. This means that my eyes actually work well... but the message of what I am seeing gets lost - so, I can't actually see. Some days, I have no sight. Some days, my eyes can focus and I can see... though no one knows just how much or how little I can see because I am too little and I don't have the words to tell anyone.
My PVL has led to my vision impairment. In very general terms, it seems that PVL stops the messages between our eyes and our brains connecting. This means that my eyes actually work well... but the message of what I am seeing gets lost - so, I can't actually see. Some days, I have no sight. Some days, my eyes can focus and I can see... though no one knows just how much or how little I can see because I am too little and I don't have the words to tell anyone.
Here are some pieces of information about Periventricular Leukomalacia (PVL):
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- PVL is injury to the white matter around the fluid-filled ventricles of the brain. White matter transmits information between nerve cells, the spinal cord and from one part of the brain to the other
- PVL is common in very premature, low birth weight babies. It is the second most common complication involving the central nervous system in premature infants.
- PVL can cause damage to the nerve pathways that control motor movements, resulting in muscles that are tight, spastic or resistant to movement, in addition to being weak.
- Babies with PVL have a higher risk of cerebral palsy and may have learning difficulties and other developmental problems.
- There is no treatment for PVL and the prognosis varies depending on the severity of the damage to the brain.
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