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Mary's Story - Brain Awareness Week

Mary, 27:

As a partner organisation of Brain Awareness Week 2020, we offered our members the opportunity to share their experience of living with a neurological condition in Ireland. Mary (27), who lives with hydrocephalus, is calling for improved access to neurological services now!

What is your experience of accessing neurological services for managing hydrocephalus?

'Varied from age to the team I was with. When I was younger, it was great. When I got older, they tried to remove me from their service despite my hydrocephalus not arresting.'

Tell us about your experiences of waiting times in accessing neurological services?

'Again, varies with age and team. Younger, great. Older with one team, awful. Huge wait times. Reduced amount of time seeing.'

How does living with hydrocephalus impact you financially?

'It used to impact me hugely, as I would be more susceptible to sinus and ear infections. Since having issues and SBHI helping me with getting the medical card, not as much.'

Is there anything else you would like to share about your experiences of living with hydrocephalus?

'My main issues would have been within education and workplace. As I am abled presenting, I feel uncomfortable disclosing my disability. However, within education I did and explained my necessary accommodations which I had to fight hard for. I would struggle with understanding the meaning of texts and tone and trying to find the answer. Which would mean it would take me longer. So I would request it and try to explain it, however people wouldn't believe me. '

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We are Spina Bifida Hydrocephalus Ireland (SBHI). We are the national organisation for everybody living with spina bifida and/or hydrocephalus across Ireland. The Equality Now website is the hub for our campaigning and advocacy activities. Thank you for visiting and please to get in touch if you need more assistance.


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