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However, spina bifida can often be managed successfully with early diagnosis, surgery, and regular therapy.
Everyday Challenges Faced by Individuals
People with spina bifida face several physical and emotional hurdles in daily life.- Mobility limitations: Many children use braces, crutches, or wheelchairs. Unfortunately, roads and public spaces in India are rarely accessible.
- Medical complications: Conditions like hydrocephalus (fluid in the brain) are common and need timely surgery.
- Social barriers: Lack of understanding leads to stigma and isolation.
- Educational access: Not all schools provide ramps or inclusive learning environments.
Healthcare and Treatment Options in India
Treatment begins soon after birth and usually continues throughout life. The main steps include:- Surgery soon after delivery: The spinal opening is closed to prevent infections and nerve damage.
- Shunt for hydrocephalus: This small tube helps drain extra brain fluid.
- Physiotherapy: Strengthens muscles and supports movement.
- Bladder and bowel training: Involves medication or scheduled routines to maintain hygiene.
Emotional Wellbeing and Family Support
Caring for a child with spina bifida can be overwhelming. Families often experience emotional stress, financial strain, and social isolation. Therefore, access to mental health care is essential.Parents who connect with support groups often find relief. For instance, the India Spina Bifida Support Group on Facebook allows families to share stories, advice, and motivation. These communities help build confidence and reduce loneliness.
Rights and Government Schemes
In India, the Rights of Persons with Disabilities Act, 2016, lists spina bifida under locomotor disability. This means that affected individuals can apply for:- Disability certificates
- Monthly pensions (in select states)
- Free bus or rail travel
- Scholarships and job reservations
Rehabilitation and Physical Therapy
Rehabilitation is vital for independence. It focuses on helping children and adults regain strength, confidence, and control over daily tasks.Key therapies include:
- Physiotherapy: Builds mobility and balance.
- Occupational therapy: Trains people to handle daily routines independently.
- Speech therapy: Supports communication if the condition affects motor control.
- Assistive devices: Wheelchairs, braces, and mobility aids enhance freedom.
Education and Career Inclusion
Inclusive education gives children with spina bifida the chance to study alongside others. However, many schools still lack accessible classrooms or trained teachers.When it comes to employment, discrimination remains a barrier. Yet, things are changing. Remote work, government job quotas, and digital entrepreneurship are helping individuals build stable careers.
Building a Brighter Future
Awareness about spina bifida has grown significantly in India. Medical advances, social inclusion efforts, and strong parental advocacy have created real change.Every year, October 25 marks World Spina Bifida and Hydrocephalus Day, which promotes education, prevention, and inclusion worldwide.
Therefore, if you or your loved one is living with spina bifida, remember that early care, awareness, and a supportive network can make a life-changing difference.
Living with spina bifida in India demands strength, patience, and the right support. While challenges persist, access to healthcare, inclusive education, and community awareness are steadily improving lives. Every small step, be it therapy, advocacy, or acceptance, adds to a larger change. With continued compassion, collaboration, and hope, individuals with spina bifida can lead fulfilling, independent lives full of dignity and possibility.
Whether you’re pregnant, a new mom, or navigating postpartum, you don’t have to do it alone. Join our support group to connect, share, and support one another.
FAQs on Living with Spina Bifida in India: Challenges, Support Systems & Hope
- Can spina bifida be completely cured?
No. But early surgery and lifelong care reduce complications and improve mobility. - Is prevention possible?
Yes. Taking 400 micrograms of folic acid daily before and during early pregnancy reduces risk. - Which doctors treat spina bifida?
A paediatric neurosurgeon, physiotherapist, and urologist usually work together. - Can people with spina bifida live independently?
Yes. With therapy and community support, many live fully, work, and raise families. - Are support networks available in India?
Yes. Spina Bifida Foundation India and ADAPT Mumbai provide therapy, resources, and counselling.
