Porencephaly is an extremely rare condition in which a cyst or cavity filled with cerebrospinal fluid develops in the brain. The condition can occur before or after birth.
Symptoms and characteristics:
Depending on the location of the extra cerebrospinal fluid, some people with porencephaly experience only minor neurological difficulties with no intellectual impairment, whilst others may have severe disability. Common symptoms include:
- delayed growth and development including delayed or absent speech development
- epilepsy
- hydrocephalus (accumulation of cerebrospinal fluid in the brain)
- hypotonia (low muscle tone)
- intellectual impairment
- microcephaly (small head) or macrocephaly (large head)
- spastic hemiplegia (slight paralysis) or spastic contractures (shortening of the muscles).
Workplace adjustments and solutions:
As the location of the extra fluid within the brain determines the impact of porencephaly on function, individual workplace assessment is recommended to determine specific needs to overcome barriers within the workplace. Assessment may recommend changes to work tasks and the environment, such as:
- use of adaptive technology such as print to voice machines for people with absence of speech
- ensuring accessibility to all areas of the workplace including kitchen and bathroom amenities, workspace and other doorways or emergency exits
- set up of kitchen amenities, office or workplace supplies, equipment and furniture which allows for independent access and use
- workstation and ergonomic chair adjustments specific to individual needs
- if having difficulty with memory, use memory aids such as job task boards, lists, task cards, computer prompts, a buddy system or alarms such as watches or timers
- build in time for breaks at work to avoid fatigue which can trigger epileptic seizures
For people with associated epilepsy that is uncontrolled, the following may also be required:
- removing sharp corners and adding padding to the edges of workstations along with the addition of anti-fatigue matting or carpet to hard floors to reduce risk of injury in the event of a seizure
- avoid the use of or working around unguarded machinery or tools which could cause injury in the event of a seizure
- avoid working from heights such as on scaffolding or ladders, around bodies of water or the use of firearms to reduce risk of injury in the event of a seizure.
(National Institute of Neurological Disorders and Stroke 2008; Epilepsy Action Australia 2001-2008; Epilepsy Action Australia (no date specified))
The Employment Assistance Fund provides financial assistance for work-related modifications, equipment and services to help people with disability to get employment and perform their work as independently and productively as possible. To determine eligibility, please refer to the full guidelines:
There are solutions and adjustments for the following job requirements related to porencephaly:
Relevant links:
References:
Epilepsy Action Australia 2001-2008, Lifestyle Issues –Employment, Epilepsy Action, Sydney, viewed 28 November 2008, http://www.epilepsy.org.au/employment.asp
Epilepsy Action Australia 2001-2008, Lifestyle Issues –Travel, Epilepsy Action, Sydney, viewed 28 November 2008, http://www.epilepsy.org.au/travel.asp
Epilepsy Action Australia 2001-2008, Lifestyle Issues –Memory, Epilepsy Action, Sydney, viewed 28 November 2008, <http://www.epilepsy.org.au/memory.asp>.
Epilepsy Action Australia (no date specified), Lifestyle Issues – Driving, Epilepsy Action, Sydney, viewed 28 November 2008, http://www.epilepsy.org.au/driving.asp
National Institute of Neurological Disorders and Stroke 2008, NINDS Porencephaly Information Page, National Institute of Neurological Disorders and Stroke, Bethesda, viewed 28 November 2008, http://www.ninds.nih.gov/disorders/porencephaly/porencephaly.htm