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Indian
Spina Bifida Association
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
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.
For Membership:
Please Email
at:
care@indianspinabifidaassociation.org
or write to
Vinita Jindel
G - 14,
Krishna marg,
C'Scheme,
Jaipur
- 302001
INDIA
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