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  • IF - Spina Bifida
    home over 70 medals Veronika is the runner up European champion of 2001 and 2003 The Slovak community has rewarded her for these achievements as the Disabled Sportsman of the Year not less than 3 times Liliana Sintra Liliana Sintra Like every woman in that occasion when I was born my mom a twenty year old girl asked if her baby was a boy or a girl Doctors just answered it doesn t matter Your baby will soon die I was born a girl Since that day twenty four years ago my mother promised herself to fight for her baby girl s life and teach her every single day that she has lots of issues in her life more important than having Spina Bifida I think I learnt the lesson I have a low lesion S1 S2 However I made lots of surgeries on my feet and wore horrible orthopaedics boots for years My colleagues at school named me Hook Leg and lots of times I thought life wasn t fair for me since the beginning My mother was never afraid about each surgery She never took off the boots or gave me the pink shoes I dreamt about She never talked to my parents colleagues Instead of this she taught me to invest in myself in doing sacrifices in waiting in believe in the future she repeated me all the time You are a girl And girls don t cry Nowadays I can walk jump and run I can dance when I go to the disco I can buy nice pretty shoes I have nice friends who like me for what I am And now I think it was hard but it was fair I learnt to read and write at the age of four At twelve I wrote two books and became the youngest Portuguese writer At thirteen I wrote another one At eighteen I went on a date with my real first boyfriend who had never heard about Spina Bifida but was someone who didn t care about it At twenty one I finished my degree in Psychology Five months later I got my first job in a recognized institution which supports children and teenagers with social and family needs I never allow anyone to show special preference to me or discriminate against me because I have a handicap It may seems like a stupidity and proud but I like to think that everything I got was because I am a clever girl and not because I was born with Spina Bifida In my life I dreamt I fought I worked I failed and I tried again for my ideals like everyone else I am not proud for having Spina Bifida but I didn t order it so I think it s not my fault and I mustn t have to justify that all the time Living with Spina Bifida never helped or prejudiced me in fighting for or reaching my goals It was never determined for nothing I don t believe people who say I have Spina Bifida and I like it No one likes standing in hospitals for months or walking in a wheelchair I don t like living with Spina Bifida but I have no choice and I learnt about the best strategies to overcome some particular disabilities There are not better or worse strategies there are just different ways to doing the same thing As a psychologist I manage the Social and Psychological Department of ASBIHP Association for Spina Bifida and Hydrocephalus in Portugal As a volunteer I think it s important helping others specially disabled children and teenagers and giving my experience not only as a technician but also as someone who really knows what they mean In this way I feel I am giving something I would have liked to receive when I was a child I have to tell you I am not a better or a worse individual because I have Spina Bifida I have virtues I have defects I have fears I cry and I smile I like summer and buying clothes I hate being on diets and I hate getting up early I want to be successful in my career and I dreamt about marrying and having four children and taking lots of folic acid before get pregnant J More than everything I like living After everything is said and done I am just a girl Liliana Sintra Carole Armour Carole Armour UK My father was a founder member of ASBAH UK and so I have been involved with the association both nationally and locally for most of my life My involvement with Your Voice the ASBAH Disabled Users forum has lasted about ten years I have attended and helped organize some of the events that the group has arranged in that time including two big conferences in 1997 and 2000 Last year 2003 I was the chair of Your Voice and became more involved with how ASBAH thinks and operates for example in matters such as funding for the group As chair there is always someone you need to speak to here a knowledge of other members skills is particularly useful together with an awareness of whether a member is temporarily unavailable to help for say medical or private reasons In the past I have taken on the challenges of moving from my parents bungalow to sheltered housing then to council housing and finally to living fully in the community with my partner Malcolm who I have known for fourteen years Before moving to Leicester twelve years ago from Sussex I worked for twenty years in a large secondary school as a telephonist receptionist full time during term time I have been on the Leicester ASBAH committee for ten years and Malcolm joined the committee about four years ago The two of us spend a lot of our spare time growing plants to sell for the association I also arrange trips for our local members which

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  • IF - Spina Bifida
    Developing countries Newsroom Forum Links Introduction Continence management Latex allergies Pressure sores Mobility Prevention of neural tube defects Information for parents to be Living with SB testimonies Leaflets for adolescents with Spina Bifida Spina Bifida Leaflets for adolescents with Spina Bifida Download Leaflets for Adolescents with Spina Bifida and or Hydrocephalus see PDF files Say No to Bullying Continence and You Feel Good About Yourself Keep It Clean Making Friends

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  • IF - Hydrocephalus
    hydrocephalus Secondary effects Slit Ventricle Syndrome Treatment of Hydrocephalus Causes of hydrocephalus The condition is caused by the inability of CSF to drain into the bloodstream There are many reasons why this can happen Congenital Hydrocephalus This means that hydrocephalus is present at birth It is important to remember that this term does not imply that it is hereditary Often the exact cause of congenital hydrocephalus cannot be determined Prematurity Babies born prematurely are at risk of developing hydrocephalus A baby born early is far more vulnerable than one which goes the full term since it is still developing The area which lies just beneath the lining of the ventricles in the brain is particularly important because of the activity in this area it has a plentiful of blood supply Its blood vessels are very fragile and can easily burst if the baby suffers too large a swing in blood pressure or becomes severely ill from other causes If these complications do occur then the baby is at risk of developing a haemorrhage from rupture of the fragile vessels This can lead to a blood clot developing which in some cases is big enough to break through the wall of the ventricle Should the clot block the flow of CSF the baby will develop hydrocephalus The blockage may be temporary or permanent Even if a blood clot does not develop the blood cells from the haemorrhage can cause blockage Spina Bifida Most babies born with spina bifida have hydrocephalus In addition to the lesion in the spinal cord there are abnormalities in the structure of certain parts of the brain which develop before birth This prevents proper drainage of the CSF The increase in pressure can compress the abnormal parts of the brain even further Other forms of brain haemorrhage including those occurring in adults stroke can result in this type of post haemorrhagic hydrocephalus Meningitis This is an infection of the membranes covering the brain The inflammation and debris from this infection block the drainage pathways resulting in hydrocephalus Meningitis can occur at any age but it is more common in children The incidence of one form haemophilus meningitis has been drastically reduced by the HIB vaccine Dandy Walker Cysts There is a particular group of disorders involving the formation of fluid filled cysts in the CSF system for example Dandy Walker cysts In these cases hydrocephalus is often developed due to the pressure on the surrounding tissues by the enlarging cyst Tumours Tumours of the brain cause compression and swelling of surrounding tissues resulting in poor drainage of CSF In the treatment of brain tumours it is often necessary to include measures to control hydrocephalus which may only be temporary Genetic In very rare circumstances hydrocephalus is due to hereditary factors which may affect future generations Other causes There are many other very rare causes of hydrocephalus Secondary effects There can be learning difficulties associated with hydrocephalus such as problems with concentration reasoning and short term memory Hydrocephalus

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  • IF - Hydrocephalus
    is completely enclosed so that all of it is inside the body The fluid which is drained into the abdomen passes from there into the bloodstream Other drainage sites such as the outer lining of the lungs ventriculo pleural shunt can also be used Possible Complications In most cases the shunts are intended to stay in place for life though alterations or revisions might become necessary from time to time The tube or catheter may become too short as the individual grows and an operation to lengthen it might be necessary Occasionally as with any implant there can be mechanical failure Also it is important to be aware that problems can occur with blockage or infection of the shunt What Symptoms Should be Looked for These vary enormously between individuals Previous personal experience of a shunt problem is usually a reliable guide as to what to look for Possible signs of acute shunt blockage may include vomiting headache dizziness photophobia sensitivity to light and other visual disturbances drowsiness and fits Possible signs of chronic shunt blockage may include fatigue general malaise visuo perceptual problems behavioural changes decline in academic performance being just not right from the carer s point of view Medical advice should be sought from your neurosurgical unit if a shunt blockage is suspected within four hours of acute symptoms occurring In shunt infections symptoms vary with the route of drainage In ventriculo peritoneal shunts the symptoms often resemble those of a blockage This is because the shunt becomes infected and the lower catheter is very often then sealed off by tissue There may be accompanying fever and abdominal pain or discomfort In ventriculo atrial shunt infections fever is present in most cases though often intermittently Anaemia is frequently present and sometimes skin rashes along with joint pains

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  • IF - Hydrocephalus
    one quarter to nearly one hundred percent Management of hydrocephalus by Third Ventriculostomy creates a natural bypass within the brain allowing the fluid to drain This is a procedure that does not have the complications of shunt insertion Infection is rare and the morbidity is very low This low morbidity operation is a valid treatment for hydrocephalus in the difficult conditions of developing countries where follow up is inconsistent and

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  • IF - Hydrocephalus
    Newsroom Forum Links Introduction Shunting Endoscopic Third Ventriculostomy ETV Hydrocephalus in developing countries Living with Hydrocephalus testimonies Hydrocephalus Hydrocephalus in developing countries Initial experience in the IF projects shows that hydrocephalus is very common in developing countries To read more

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  • IF - Hydrocephalus
    disclaimer About IF Spina Bifida Hydrocephalus Pregnancy Folate Human rights Developing countries Newsroom Forum Links Introduction Shunting Endoscopic Third Ventriculostomy ETV Hydrocephalus in developing countries Living with Hydrocephalus testimonies Hydrocephalus

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  • IF - Pregnancy
    should be balanced with all other factors Doctors will explain the medical factors of your child s condition but there are other sources of information Try to receive this information as a couple It is easier if both partners hear and share all information Together you hear more The stark medical information is can be alarming and may need repeating several times before you really understand all that is being said and you need time to absorb this information Even in today s technical age it is difficult for doctors to assess accurately the severity of disability of your child even if they are specialists in the condition Some gynaecologist are very negative when assessing the quality of life for those with Spina Bifida and Hydrocephalus This is a pity because most gynaecologists lack practical experience of these conditions Therefore it is good to have more sources than your gynaecologist Internet is useful for basic information But you should also contact the parent organisation of your region or a consultation with spina bifida team will help you Why me why us why our child This is usually the first reaction of most people It is not your fault It is difficult to accept that you and not another are the one or two in a thousand parents who are faced with this Scientific research shows that many factors contribute to the development of Spina Bifida and Hydrocephalus It is important to remember that it is not your fault It was not your diet or any accident that you had that caused child s disability Spina Bifida can occur even in ideal situations What we do know is that taking folic acid before conception and into the third month of pregnancy can reduce the possibility of Spina Bifida by 75 What can you do to improve your child s situation There is a lot you can do but one of the most important things it to take time and to speak about your feelings The following is a list of some of the things you can do Continue the healthy lifestyle as you had from the beginning of pregnancy Smoking and abuse of alcohol is bad for all children also when they have a disability Accept that the unborn child is yours It is the same child that you loved before the diagnosis The only difference is the information you have received You love your child and this love will help you and your child in many ways Make an appointment with specialist advisors who can provide up to date information about Spina bifida and hydrocephalus Treatment has improved dramatically over the last decade and this will influence the prognosis Ask to meet other parents who have a child with Spina Bifida and Hydrocephalus They can talk to you about how they cope and live with the problems which may arise In most cases the ideal situation for your child is to have a full and complete pregnancy Your child is

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