Is PVL a disability or will it lead to one?

NatzG20
NatzG20 Community member Posts: 3 Listener
in Families and carers
My son was diagnosed with severe PVL on both sides of the brain mainly left side and was told his gross and motor skills will be affected as well as learning difficulties later on in life. My main questions are: Is my son classed as disabled? I ask this as i personally will find it easier to know yes he is and i learn how to deal with it and help him in life rather then constantly be told oh he may be or he will struggle we just don't know how much yet!

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  • Rocky
    Rocky Community member Posts: 75 Connected
    Hi, PVL is damage to the ventricles in the brain. These ventricles are largely responsible for the circulation of the Cerebro Spinal Fluid around the brain. PVL often does lead to a diagnosis of cerebral palsy or similar disability as the impairment to that part of the brain can affect movement, mobility and muscle tone. Cerebral Palsy is considered an umbrella term because there are many causes and no two people are affected in the same way so the condition can be very wide ranging. As mentioned in a previous posting on this page, you can find further information on the Scope website about PVL but I hope your son's Consultant will be talking to you about what services/therapies are available and how you son may be affected individually.
    From your photo, your son still looks very young so the doctors may be running tests such as MRIs and Scans to determine the level of impairment but will also be waiting to see how he develops especially around the milestones of sitting, crawling, walking etc.

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