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Raising Children Topics..

 
You are here : home > Raising Children > Childhood Concerns > Indian Spina Bifida Association

Indian Spina Bifida Association

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
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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8 Comments
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.3 years ago
My 1yr baby suffering frm sbs frm T12 region to L5 region wth absence of corpus callosum. She is very active recognize her relatives n unkown persons... she is not properly holding her head n not speak properly maa papa...... I m worried abt tat can u help me.... tell medical policy n funds organizations.
 
 
 
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Reply
Anurag.4 years ago
I am 16 year old boy and have undergone surgery when I was two months old for spina bifida occulta.but now I am experiencing severe pain in my both legs upto calf muscles.intensity of pain is severe during nights ..I had MRI and CT scan done my report says resultant bilateral severe foraminal narrowing at L5-S1 level.Diffuse posterior bulge of L5-S1 disc.Breaks are seen in bilateral pars intra articularis of L5 with grade 11 to 111 anteriolisthesis of L5 over S1 Marked sclerosis is seen in adjacent end plates of the L5-S1 disc with adjacent osteophytosis.right now I am consulting chiropractor for my condition My question is (1) will my condition improve or worsen with the treatment.
(2) I want to avoid surgery what are the other options.
First surgery Dr Advice is detethering of the spinal cord
Second fixing spondylolisthesis
(3) I want to play football ..
Please help me becoz I am unable to concentrate on my studies because of pain..
 
 
 
.
Reply
ameera.4 years ago
what is Indian Spina Bifida Association ??? please explain me in simple language
 
 
 
.
Reply
Edelburg.5 years ago
I am a mother of a 30yr. daughter who is a English Lietrature graduate and has done computer basics in graphics and as well as DTP. She has been unable to find a suitable job for her and is very much frustrated and spends sleepless nights. How to cope with this.
 
 
 
.
Reply
Vinita jindel.7 years ago
Please change the contact to
vinita@indiaspinabifidaassociation.org/

Thanks
http://indiaspinabifidaassociation.org/
 
 
 
.
Reply
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Discussion Forum - Recent Posts
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! We at Indian Spina Bifida Association aim to give moral support and latest information in the field of medicine. Let us come forward and help each other towards a better future for our children. Have you heard about this birth deffect? Talk about it!
adil
ya its amazing!...
kamya
hi ,i have a 9 yr old neice suffering from the same.i would like to know what precautionary measures you take about the bowel and bladder system.it would be a great help.thank you...
Edelburg
I visited your site. I saw him swimming. Very good keep it up. It is a good Hydro therapy.
I am a new member over here, mother of a daughter who is also having spina bifida....
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