Unlock vital insights and support with our comprehensive guide to spina bifida resources, ensuring families have the information they need for effective care.
Spina Bifida is a complex birth defect that affects the spine and nervous system, presenting unique challenges for individuals living with the condition, their families, and caregivers. Understanding and accessing support options, services, and resources is crucial for managing the diverse medical, emotional, and social aspects of Spina Bifida. From specialized healthcare and adaptive equipment to educational support and community connections, a comprehensive network of resources can significantly improve quality of life and promote independence. By learning about available support systems, individuals with Spina Bifida and their support networks can better navigate the complexities of the condition, make informed decisions, and access the tools necessary for optimal health and well-being throughout their lives.
Spina Bifida Fact Sheets: Key Information About the Disease
Spina Bifida Information Page: Detailed information on spina bifida, including types, symptoms, and treatment options from the National Institute of Neurological Disorders and Stroke.
Spina Bifida: A collection of resources on spina bifida from MedlinePlus, including an overview, diagnosis, treatments, and related issues.
Spina Bifida Fact Sheet: Key facts about spina bifida from the Centers for Disease Control and Prevention, including prevalence, types, and prevention.
Spina Bifida Association Information Sheets: A collection of information sheets on various aspects of spina bifida from the Spina Bifida Association.
Neural Tube Defects Fact Sheet: Information on neural tube defects, including spina bifida, from the March of Dimes.
Advocating for Spina Bifida: A List of Patient Advocacy Groups
Spina Bifida Association: Provides education, advocacy, research support, and community-building programs for individuals and families affected by Spina Bifida.
Spina Bifida Resource Network: Offers educational resources, social events, and advocacy programs to empower people with Spina Bifida and other disabilities.
Spina Bifida Association of Greater New England: Serves the New England region by providing support, resources, and community events for those impacted by Spina Bifida.
Spina Bifida Association of North Texas: Supports and connects communities across North Texas, offering services, resources, and programs for families and adults with Spina Bifida.
Spina Bifida Association of Kentucky: Provides support, education, and advocacy for individuals and families affected by Spina Bifida in Kentucky.
Spina Bifida Association of Alabama: Offers support, resources, and programs for individuals and families affected by Spina Bifida in Alabama.
Spina Bifida Association of Western Pennsylvania: Serves individuals with Spina Bifida and their families in Western Pennsylvania through various support programs and services.
Finding Support: A Directory of Spina Bifida Support Groups
Spina Bifida Awareness & Support Group: Provides support for families in and around New Hampshire, focusing on families expecting a baby with spina bifida and offering a relaxed atmosphere for sharing experiences and advice.
STAR (Steps Toward Adult Responsibility) Program: Assists teens with chronic physical health conditions, including spina bifida, through a group mentoring program that connects them with Dartmouth College students who also have chronic health concerns.
Teens Coping Program: A peer support network run by Granite State Independent Living, offering quarterly meetings for teens to discuss disability awareness, adapted driving, college preparation, and community involvement.
SBANT Adult Group: Organizes dinner events across the metroplex for adults with Spina Bifida, providing opportunities for socializing and community building.
SB Connect: An online platform offered by the Spina Bifida Association that allows individuals with Spina Bifida and their families to connect, share insights, and support each other.
SBAGNE Adult Group: Hosts dinners and events for adults living with Spina Bifida aged 18 and up, providing peer support and social opportunities.
Connecting with Others: Online Forums and Discussion Boards for Spina Bifida Patients
Spina Bifida Association Community Forum: An online platform where individuals with Spina Bifida, their families, and caregivers can connect, share experiences, and seek advice from others in the community.
Spina Bifida Prevention Forum: A diverse community dedicated to preventing Spina Bifida and other neural tube defects, offering resources, information, and support for those affected by the condition.
Spina Bifida Room: A private Facebook group where individuals with Spina Bifida can connect, share experiences, and offer support to one another.
Adults with Spina Bifida: A Facebook group specifically for adults aged 18 to 80 living with Spina Bifida, providing a space for peer support and discussion.
Health and Wellness for Women with Spina Bifida: A Facebook group focused on health and wellness topics specifically for women living with Spina Bifida.
Spina Bifida and Hydrocephalus Support Group: This is an on-line group discussion for, parents, family members, siblings,Medical professionals, and expecting parents focussed on Neural Tube Defects and spicifically Spina Bifida Cystica and Spina Bifida Occulta.
Participating in Research: Current Spina Bifida Clinical Trials
CuRe Trial: Cellular Therapy for In Utero Repair of Myelomeningocele: Conducted by UC Davis Health, this groundbreaking clinical trial combines fetal surgery with stem cell therapy to potentially reverse paralysis and improve outcomes for children with spina bifida before birth.
Management of Myelomeningocele Study (MOMS): Led by the Children’s Hospital of Philadelphia, this federally sponsored study investigates the benefits of prenatal surgery for myelomeningocele, the most severe form of spina bifida, showing improved motor outcomes and reduced need for brain shunts.
NICHD Spina Bifida Clinical Trials: The Eunice Kennedy Shriver National Institute of Child Health and Human Development supports various clinical trials focused on spina bifida, offering opportunities to participate in research aimed at improving treatment and outcomes.
Managing Costs: Financial Assistance for Spina Bifida Patients
Help Hope Live: Provides community-based fundraising assistance for individuals with Spina Bifida to help cover medical expenses and related costs.
First Hand Foundation: Offers funding for children with health-related needs, including those with Spina Bifida, covering items such as medical equipment, travel expenses for treatment, and vehicle modifications.
UnitedHealthcare Children’s Foundation: Provides medical grants to help children, including those with Spina Bifida, gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan.
Challenged Athletes Foundation: Offers grants to individuals with physical challenges, including Spina Bifida, to support participation in sports and active lifestyles.
Wheel to Walk Foundation: Assists children and young adults (up to age 20) with disabilities, including Spina Bifida, by providing funding for equipment not covered by insurance.
Traditional Treatments: Conventional Medicine for Spina Bifida
Johns Hopkins All Children’s Spina Bifida Clinic: Offers comprehensive care for children with spina bifida, including pediatric rehabilitation medicine, neurosurgery, physical therapy, occupational therapy, and social work services.
Shriners Children’s Spina Bifida Care: Provides multidisciplinary care for children with spina bifida, including motion analysis, orthotics, pediatric rehabilitation services, assistive device evaluations, and specialized orthopedic and urologic surgeries.
Kennedy Krieger Institute’s Center for Spina Bifida and Related Conditions: Offers comprehensive care for both children and adults with spina bifida, including physical medicine and rehabilitation, physical and occupational therapy, neuropsychology, and nutrition services.
Spina Bifida Association’s Clinical Care Partners: Provides a network of clinics across the United States that meet specific standards for implementing best practices in spina bifida care, ensuring patients receive optimal treatment and support.
Cincinnati Children’s Spina Bifida Center: Offers comprehensive care for children with spina bifida, including neurosurgery, urology, orthopedics, and developmental pediatrics, with a focus on improving quality of life and long-term outcomes.
Boston Children’s Hospital Spina Bifida Center: Provides multidisciplinary care for children with spina bifida, offering services in neurosurgery, urology, orthopedics, and physical and occupational therapy, with a focus on personalized treatment plans.
Exploring Alternatives: Complementary and Alternative Medicine for Spina Bifida
Spina Bifida Association’s Complementary and Alternative Medicine Page: Provides information on various complementary and alternative medicine approaches that some individuals with spina bifida have found helpful, including acupuncture, massage therapy, and herbal supplements.
National Center for Complementary and Integrative Health’s Spina Bifida Page: Offers evidence-based information on complementary health approaches for managing spina bifida-related symptoms and improving quality of life.
Holistic Pediatric Association: While not specific to spina bifida, this organization provides resources on integrative and holistic approaches to pediatric health, which may be beneficial for children with spina bifida.
American Holistic Nurses Association: Offers resources and education on holistic nursing practices that can be applied to the care of individuals with spina bifida, focusing on the mind-body-spirit connection.
Integrative Medicine for Children with Special Needs: Dr. Andrew Weil’s website provides information on integrative medicine approaches that may benefit children with special needs, including those with spina bifida.
Supporting Loved Ones: Resources for Spina Bifida Families and Caregivers
Spina Bifida Association’s Family Support: Offers a variety of resources for families, including educational materials, support groups, and connections to local chapters for personalized assistance.
Spina Bifida Resource Network’s Family Support Services: Provides support groups, educational workshops, and social events for families affected by Spina Bifida in New Jersey and surrounding areas.
Spina Bifida Association of Kentucky’s Family Programs: Offers various programs and events to support families, including family retreats, educational seminars, and social gatherings.
Spina Bifida Association of Alabama’s Family Resources: Provides information on local support groups, educational resources, and financial assistance programs for families in Alabama.
Spina Bifida Association of Greater New England’s Parent Support: Offers parent-to-parent connections, support groups, and educational resources for families in the New England region.
Spina Bifida Association of North Texas’s Family Programs: Provides various support programs for families, including educational workshops, social events, and connections to local resources.
Spina Bifida Coalition of Cincinnati’s Family Support: Offers support groups, educational resources, and social events for families affected by Spina Bifida in the Cincinnati area.
Navigating Spina Bifida in School: Resources for Students
Spina Bifida Association’s Education Resources: Provides resources and guidance for educators and students with Spina Bifida, including strategies for classroom accommodations and individualized education plans.
ACEs-LA Resources for Young Adults with Spina Bifida: Offers a variety of resources specifically for young adults with Spina Bifida, including support groups and educational materials to assist in navigating school environments.
PACER Center: While not exclusively focused on Spina Bifida, PACER Center offers resources and support for students with disabilities, including those with Spina Bifida, to help them succeed in educational settings.
Raising a Child with Spina Bifida: Guidance and Support
Spina Bifida Association’s Parent Resources: Offers comprehensive resources for parents raising children with Spina Bifida, including educational materials, webinars, and connections to local support groups.
Spina Bifida Resource Network’s Parent Support: Provides one-on-one support, educational workshops, and social events for parents of children with Spina Bifida in New Jersey and surrounding areas.
Spina Bifida Association of Kentucky’s Parent Programs: Offers various programs and events to support parents, including family retreats, educational seminars, and social gatherings for families affected by Spina Bifida.
Spina Bifida Association of Greater New England’s Parent Support: Provides parent-to-parent connections, support groups, and educational resources for families in the New England region raising children with Spina Bifida.
Spina Bifida Association of North Texas’s Parent Programs: Offers various support programs for parents, including educational workshops, social events, and connections to local resources for families affected by Spina Bifida.
Spina Bifida Coalition of Cincinnati’s Parent Support: Provides support groups, educational resources, and social events for parents raising children with Spina Bifida in the Cincinnati area.
Center for Parent Information and Resources’ Spina Bifida Guide: Offers comprehensive information and resources for parents of children with Spina Bifida, including educational rights and early intervention services.
Caregiving for Elderly Spina Bifida Patients: Tips and Strategies
Kennedy Krieger Institute’s Center for Spina Bifida and Related Conditions: Provides comprehensive care for adults with spina bifida, including elderly patients, offering specialized services such as neurological monitoring, continence management, and dedicated social work support.
UPMC Adult Spina Bifida Clinic: Offers coordinated care for adult and elderly patients with spina bifida, addressing age-related challenges and providing specialized treatments to maintain quality of life.
Spina Bifida Association’s Adult Resources: Provides information and resources specifically tailored for adult and aging individuals with spina bifida, including health management tips and community support options.
Frequently Asked Questions about Spina Bifida
What is Spina Bifida?
Spina Bifida is a birth defect that occurs when the spine and spinal cord don’t form properly. It’s a type of neural tube defect that happens in the first month of pregnancy, resulting in an incomplete closing of the backbone and membranes around the spinal cord.
What causes Spina Bifida?
There is no known direct cause of Spina Bifida. Experts believe that a combination of genetic and environmental factors might interact to cause it. Low folate levels before and during early pregnancy have been linked to an increased risk of neural tube defects, including Spina Bifida.
What are the different types of Spina Bifida?
There are three main types of Spina Bifida: Spina Bifida occulta (the mildest form), meningocele (a rare type where a sac of spinal fluid protrudes through an opening in the back), and myelomeningocele (the most severe form where part of the spinal cord and nerves protrude through an opening).
How is Spina Bifida diagnosed?
Spina Bifida can be diagnosed during pregnancy through prenatal screening tests such as maternal serum alpha-fetoprotein (MSAFP) test and ultrasound examinations. In some cases, it may be diagnosed at birth or later in life for milder forms.
Can Spina Bifida be prevented?
While it’s impossible to prevent all cases of Spina Bifida, the risk can be reduced. Studies have shown that taking 400 mcg of folic acid daily before and during early pregnancy can significantly reduce the risk of neural tube defects, including Spina Bifida.
What are the treatment options for Spina Bifida?
Treatment depends on the severity of the condition. It may include surgery before or after birth, physical therapy, occupational therapy, and assistive devices. Some children may require ongoing medical care and support from a team of specialists.
How does Spina Bifida affect a person’s life?
The impact of Spina Bifida varies widely. Some individuals with mild forms may have few or no symptoms, while those with more severe forms may experience mobility issues, bladder and bowel problems, and in some cases, learning difficulties. Many people with Spina Bifida lead full and active lives with appropriate support and care.
Is there a cure for Spina Bifida?
There is currently no cure for Spina Bifida, but treatments and interventions can help manage the condition and its associated complications. Research is ongoing to improve treatment options and outcomes for individuals with Spina Bifida.
How common is Spina Bifida?
In the United States, Spina Bifida occurs in approximately 7 out of every 10,000 live births, making it the most common permanently disabling birth defect.
Can children with Spina Bifida attend regular schools?
Many children with Spina Bifida can and do attend regular schools. However, they may require additional support or accommodations depending on their specific needs. Special education services and individualized education plans (IEPs) can help ensure these children receive appropriate support in the school setting.
Hope for the Future: Current Research and Potential Cures for Spina Bifida
UC Davis Health CuRe Trial: Conducts groundbreaking clinical trials combining fetal surgery with stem cell therapy to potentially reverse spina bifida before birth, offering hope for improved outcomes and possible cures.
California Institute for Regenerative Medicine (CIRM) Spina Bifida Research: Funds innovative research using placental stem cells for in utero treatment of spina bifida, aiming to develop therapies that could potentially cure the condition.
Spina Bifida Association Research Updates: Provides the latest information on ongoing research initiatives, clinical trials, and potential treatments for spina bifida, keeping the community informed about progress towards better outcomes and potential cures.
UTHealth Houston Spina Bifida Research: Conducts extensive genetic research to identify factors associated with spina bifida, aiming to improve understanding of the condition and potentially develop preventive measures or targeted treatments.
Children’s Hospital of Philadelphia Spina Bifida Research: Engages in various research projects focused on improving treatments and outcomes for children with spina bifida, including studies on prenatal surgery and long-term health management.
National Institute of Neurological Disorders and Stroke Spina Bifida Information Page: Provides updates on current research efforts and clinical trials aimed at developing new treatments and interventions for spina bifida.
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