IT HAPPENED TO ME:Spina bifida: the facts Anne Reid was diagnosed with spina bifida occulta five minutes after she was born - at the age of 13 she became a wheelchair-user. This is her story, as told to Fiona Tyrrell.
LIVING WITH spina bifida is not that dreadful in many ways, but where you live and how wheelchair accessible it is can make a very big difference to your life. My pet peeve at the moment is Dublin City Council's pavement ramp policy. It is very inconsistent - ramps on one corner, and not the next. I often end up on the road.
I was diagnosed with spina bifida five minutes after I was born. There are many categories of the disease. I have spina bifida occulta, which is sometimes called hidden spina bifida. I was born with a small red mark on my back and what is called a club foot. It is not as bad as the other forms of the condition. I don't have paralysis and I have movement and sensation.
My mother, Myra, was very forward-thinking and brought me up the same way as my brother, Derek. Her attitude was: "Okay, your legs don't work but your brain is fine."
So I grew up believing that just because I couldn't walk didn't mean that I couldn't do things.
I went into a wheelchair at the age of 13. Going from crutches to a wheelchair was a major transition. People's attitude to you change when you are in a wheelchair.
At the start, I didn't want to be seen in a wheelchair, but my mother arranged for me to go to a youth club. I didn't want to go. She put me outside the front door and said she wouldn't let me back in until I had gone to the club. At the time, I was furious, but it made me face my fears.
I was very stubborn as a young adult and was determined to have my own life. It was much more difficult to get around when I was young, but I didn't let it stop me. There was an incident when my wheelchair [ without me in it] fell out of a bus on Dame Street. It landed on all four wheels and rolled down the street with the bus conductor in hot pursuit. The bus driver, meanwhile, was being eaten alive by the old ladies.
When I was 18 I played Dr Scott in the Rocky Horror Showin Harold's Cross for a year. That was during my years of teenage high spirits.
Now, I volunteer as a youth officer with the Irish Association for Spina Bifida & Hydrocephalus (IASBAH). As a youth officer I am there to provide information to young adults and their parents.
When I was growing up, there was no such thing for my parents. Having someone there to answer your questions can mean the difference between surviving with a child with spina bifida and drowning.
At IASBAH the aim is to give people as much information as possible. Information is power and it also prepares you for the outside world.
Doctors in Ireland show a lack of education about spina bifida and there are no doctors with specific training for spina bifida in Ireland. Some doctors can't tell the difference between spina bifida and Down syndrome. I find I have to repeat myself all the time.
For most of my life, I've had very few health problems, but in the past few years I have had a lot of pain in my back. The part of my spine, where I had a spinal fusion when I was 13, is deteriorating.
I attended one consultant for six years but he never got to the bottom of my problem.
A hospital registrar told me he would not be in as much of a hurry to operate on me as he would with an able-bodied person. I was fuming. The next day I rang the UK Association for Spina Bifida and Hydrocephalus and asked if there were any doctors specialising in adult spina bifida in Britain. I was told that there were 40.
Now I travel to England to attend a clinic headed up by Dr Richard Morgan in Chelsea and Westminster Hospital. I attend this clinic once a year. In one day I get to meet all the medical professionals I need to see. I go to this clinic under the overseas provision of the medical card scheme.
I am due to see a neurosurgeon and orthopaedic surgeon in Britain this summer to see what is the best approach to deal with my back pain.
Access to similar services and trained doctors should be available to Irish patients. We should not have to go through such hassle just to find information on up-to-date treatments and the latest protocols.
In Ireland when a child turns 16 he or she is moved out of the paediatric system. Finding a doctor who can deal with them is a nightmare and often they fall through the cracks.
Twenty years ago in Ireland, spina bifida was a death sentence. The parents of most people living with spina bifida in Ireland today were told their child would not live beyond two years of age.
Things are changing. Because of medical advancement there is much more hope for people with spina bifida.
Accessibility is a key issue for people like me. It affects every part of your life, particularly your social life. One of the first things I think of before I do anything is how accessible the venue or location is.
Going out for a meal can be a nightmare, mainly because of lack of accessible toilets. There is only one wheelchair-accessible toilet on O'Connell Street in Dublin after 6pm - The Royal Dublin Hotel.
When I got married to my husband, David, 16 years ago it was a big deal to find a hotel where I could go in the front door - not through the back or via the kitchen. While I was shopping for the wedding people always assumed it was my sister, not me, who was getting married.
Things are changing a lot. When I was in my teens there were very few people in Dublin city centre in wheelchairs. Now nobody thinks twice when they see someone in a chair now.
Now something like 50 per cent of Dublin Bus buses are accessible and the Luas is fabulous, but we have a long way to go.
There are days when I am mad at the world, but that doesn't get you anywhere. You have to find a way to channel that energy to make it productive.
The "poor me" attitude doesn't get you anywhere. It is more isolation than anger, because you can be very marginalised and that can be very frustrating and very down heartening.
Disability is not something to fear. People with disabilities have the same needs and wants as able-bodied people. These days having a disability doesn't mean you can't do things. It just means that you have to find new ways of doing things.
[ healthsupplement@irish-times.ie ]
Spina bifida: the facts
Spina bifida affects about one in every 1,000 children born per year in Ireland.
It is the most common neural tube defect (NTD) and is caused by the incomplete development of the vertebrae in the spinal cord.
The vertebrae are split and the spinal cord and its coverings usually protrude through a sac-like bulge on the back, covered with a thin membrane.
The effects of spina bifida vary enormously, depending on the type, the location of the cyst and the severity of the condition.
Effects include Hydrocephalus, varying degrees of paralysis, pressure sores, loss of sensation of the lower limbs, malformations, latex allergies, social and sexual issues, and bowel and bladder incontinence.
Thanks to new medical treatments and technology, most people born with spina bifida can expect to live a normal life.
The exact cause of spina bifida is unknown, but it is thought to be a combination of environmental and genetic factors and a lack of folate in the diet - or the inability to naturally absorb folate.
Taking folic acid cannot prevent all occurrences of spina bifida but it can help to reduce the risk by up to 75 per cent, according to the Irish Association for Spina Bifida and Hydrocephalus.
Positive Life Choices is the theme of IASBAH's conference which runs on Friday, May 9th to Sunday, May 11th in Cork
For further information, log on to www.iasbah.ie or phone 1890-202260