Spina Bifida is a rare disease affecting children. This disease is present from the birth. Indian Spina BifidaAssociation is formed to provide information and support to the parents of children affected by this disease.Spina Bifida is a congenital disorder (birth defect) where the backbone and spinal canal do not close before birth. This allows the spinal cord and and spinal canal do not close before birth. This allows the spinal cord and the covering membranes to protrude out of the childs back. Protrusion of the spinal cord and meninges damages the spinal cord and nerve roots, causing a decrease or lack of function of body areas controlled at or below the defect. Most defects occur in the lower lumbar or sacral areas of the back (the lowest areas of the back) because this area is normally the last part of the spine to close. Symptoms include partial or complete paralysis of the legs, with corresponding partial or complete lack of sensation, and may include loss of bladder or bowel control. The exposed spinal cord is susceptible to infection (meningitis). Symptoms visible sac like protrusion on the mid to lower back of the new born. Weakness of the hip, leg or feet of a newborn. tuft of hair at the sacral area (back part of the pelvis)or dimpling of the sacrum. The parents of these children have to face the ordeal without any support or proper guidance. They need help at every step in bringing up an extraordinary child with special needs. We at Indian Spina Bifida Association aim to give moral support and latest information in the field of medicine. A common platform in the form of bulletin board is present at the site where all members are connected to each other even when they are thousands of miles away. The members are free to give suggestions and actively participate in the activity of the Association. It is not necessary for the members to disclose their identity. Our Objectives 1. Enhance and improve the quality of life of all affected with spina bifida. 2. To give mutual and emotional support and help in all the possible ways. 3. To develop contacts and communication between parents. 4. To provide a common place for parents to share there experiences and doubts. 5. To provide information in the field of research and medicine. 6. To provide optimism and encouragement for parents and children. 7. To promote the prevention of Spina Bifida by primary prevention and developing awareness among people. 8. To create a medium where qualified professionals can give their opinions and advice. In India very little work has been done in this area. This led to the formation of Indian Spina Bifida Association. It is a sincere effort of a parent to work for the benefit of all who are affected with SPINA BIFIDA. Families with a child who has spina bifida have special concerns and often need a great deal of information: information about the disability and other related problems of their child, about school services, therapy, local policies, funding sources, transportation, medical facilities, and much more. Parents will find it very useful to join ISBA, where they can meet other families with similar needs. ISBA can serve many purposes, but primarily they offer parents a place and a means to share information, give and receive emotional support, and work as a team to address common concerns. Let us come forward and help each other towards a better future for our children. children. For Membership: Please Email at: care@indianspinabifidaassociation.org or write to Vinita JindelG - 14, Krishna marg,CScheme,Jaipur - 302001INDIA
Spina Bifida is a rare disease affecting children. This disease is present from the birth. Indian Spina BifidaAssociation is formed to provide information and support to the parents of children affected by this disease.Spina Bifida is a congenital disorder (birth defect) where the backbone and spinal canal do not close before birth. This allows the spinal cord and and spinal canal do not close before birth. This allows the spinal cord and the covering membranes to protrude out of the child's back.
Protrusion of the spinal cord and meninges damages the spinal cord and nerve roots, causing a decrease or lack of function of body areas controlled at or below the defect. Most defects occur in the lower lumbar or sacral areas of the back (the lowest areas of the back) because this area is normally the last part of the spine to close. Symptoms include partial or complete paralysis of the legs, with corresponding partial or complete lack of sensation, and may include loss of bladder or bowel control. The exposed spinal cord is susceptible to infection (meningitis).
Symptoms visible sac like protrusion on the mid to lower back of the new born. Weakness of the hip, leg or feet of a newborn. tuft of hair at the sacral area (back part of the pelvis)or dimpling of the sacrum.
The parents of these children have to face the ordeal without any support or proper guidance. They need help at every step in bringing up an extraordinary child with special needs. We at Indian Spina Bifida Association aim to give moral support and latest information in the field of medicine. A common platform in the form of bulletin board is present at the site where all members are connected to each other even when they are thousands of miles away. The members are free to give suggestions and actively participate in the activity of the Association. It is not necessary for the members to disclose their identity.
Our Objectives
1. Enhance and improve the quality of life of all affected with spina bifida.
2. To give mutual and emotional support and help in all the possible ways.
3. To develop contacts and communication between parents.
4. To provide a common place for parents to share there experiences and doubts.
5. To provide information in the field of research and medicine.
6. To provide optimism and encouragement for parents and children.
7. To promote the prevention of Spina Bifida by primary prevention and developing awareness among people.
8. To create a medium where qualified professionals can give their opinions and advice.
In India very little work has been done in this area. This led to the formation of Indian Spina Bifida Association. It is a sincere effort of a parent to work for the benefit of all who are affected with SPINA BIFIDA.
Families with a child who has spina bifida have special concerns and often need a great deal of information: information about the disability and other related problems of their child, about school services, therapy, local policies, funding sources, transportation, medical facilities, and much more. Parents will find it very useful to join ISBA, where they can meet other families with similar needs. ISBA can serve many purposes, but primarily they offer parents a place and a means to share information, give and receive emotional support, and work as a team to address common concerns.
Let us come forward and help each other towards a better future for our children.
children.
For Membership: Please Email at:
care@indianspinabifidaassociation.org or write to
Vinita JindelG - 14, Krishna marg,C'Scheme,Jaipur - 302001INDIA
