The CEO of a group supporting those with spina bifida has shared his own experience with the condition as its awareness week unfolds.
Gerry Maguire was born with spina bifida and was appointed CEO of Spina Bifida and Hydrocephalus Ireland back in 2021. Serious doubts over spina bifida care emerged earlier this month when it was revealed 19 children with the birth disorder suffered serious complications from spinal surgeries.
Gerry expressed dismay that it has taken a national scandal for issues with spina bifida treatment in Ireland to surface. He discussed his own life with spina bifida and how doctors responded to his condition at birth.
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He said: "When I was born my parents were told to put me in a home and forget about me. We always try to impress upon our members not to define themselves by their disabilities but rather their abilities - society will focus on the former for us, whether we want them to or not."
Ireland currently has one of the highest spina bifida rates in the developed world. The condition occurs when part of the spinal cord doesn't fully develop, leading to potential complications including paralysis and bowel and bladder issues.
The theme of this year's awareness week is 'See My Ability.' Gerry was a former advisor for the government on disability and is determined that people with spina bifida and hydrocephalus are equipped to reach their full potential in life.
He acknowledged the awareness week kicks off amid a growing furore over spina bifida care in Ireland. He said the complications from children's surgeries is just one example of the negligence spina bifida patients contend with daily.
Gerry explained: "I've seen instances where grown men and women have to more or less crawl around the floor while they're waiting for either new wheelchairs or their existing ones to undergo repairs. We shouldn't have to go to the HSE with a begging bowl asking for things that are within our rights. People's eyes are finally being opened to what those living with the condition are going through."
The group are also conscious about highlighting hydrocephalus during the awareness week. Some people living with spina bifida also have hydrocephalus, a separate condition in which cerebral spinal fluid pools on the brain.
Medical treatment involves placing a shunt in the brain to drain out the fluid. This process can interfere with motor and concentration skills and shunts usually require replacement over time.
Gerry added: "Spina bifida is very visible because people walk around with aids or wheelchairs but hydrocephalus on its own tends to be very hidden. We represent people with both conditions but we need to make sure not to forget about hydrocephalus. It's a very difficult thing to live with and we all need help fighting the same fight."
Many people living with both conditions will share their stories using the SeeMyAbility hashtag. Events such as mental health workshops and coffee mornings will run for the duration of the week.
You can find out more about the week's full schedule through Spina Bifida Hydrocephalus Ireland.
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