Spina Bifida is a disease that affects over 150,000 American children and adults. But despite its prevalence, Spina Bifida has less public awareness than many other medical conditions. Considered the most common form of permanently disabling birth defect, the disease ranges in severity from almost asymptomatic to life altering. Fortunately, for those suffering from severe forms of the Spina Bifida, there are folks in the South Bay community and Torrance home care agencies who are working to make a difference!
Here are ways communities, healthcare professionals, and government programs support Spina Bifida patients and their families.
Community Resources
Spina bifida awareness is lacking in the general population. But there are still community resources currently available for those affected. They range from local charitable groups to large national organizations and government programs. There are many avenues to explore, but the two listed below provide a helpful starting point.
Many American hospitals provide medical services for Spina Bifida patients through programs for children and those for people of all ages with spinal cord injuries. Services usually include surgery, physical/occupational therapy, and orthotics. Facilities in the Torrance and greater Los Angeles region include:
Many people are unaware that the Veterans Administration (VA) has a special Spina Bifida program. The benefits are reserved for Spina Bifida patients who are the children of Korean War and Vietnam War veterans. While these folks are now well into adulthood, they may still be eligible.
BrightStar Care of Torrance is contracted with the VA to serve as a provider of home care services for its Spina Bifida program recipients. Qualified enrollees may receive reimbursement for caregiver visits and other medical services and supplies.
Awareness & Research
While Spina Bifida cannot be prevented altogether, education and awareness can help reduce risk for expecting mothers and highlight resources for those already affected.
Americans have become more active in supporting disease-prevention and treatment causes over recent years. From Alzheimer’s to cancer, millions of people do their part to help with fundraising and awareness efforts. But Spina Bifida is not as front-and-center as many other diseases.
Fortunately, resources do exist for Spina Bifida patients and their loved ones. Public and private programs help to finance research, treatments, and support services. And home care agencies like BrightStar Care of Torrance are doing their part to contribute to the cause.
Be sure to support this year’s Spina Bifida “Walk-N-Roll” event [virtual due to COVID-19] by clicking HERE. And if you’re interested in learning about Torrance caregiver services for a friend or loved one, call BrightStar Care today for a free registered nurse assessment!
Here are ways communities, healthcare professionals, and government programs support Spina Bifida patients and their families.
Community Resources
Spina bifida awareness is lacking in the general population. But there are still community resources currently available for those affected. They range from local charitable groups to large national organizations and government programs. There are many avenues to explore, but the two listed below provide a helpful starting point.
- Spina Bifida Association – This nationwide group with a local chapter in Southern California has the mission statement, “to build a better and brighter future for all those impacted by Spina Bifida.” They help to achieve their goals by providing education, advocacy, research, and support for patients and their families.
- Federal and state disability services – All Spina Bifida patients with related disabilities qualify for disability benefits under the Social Security Administration (SSA). Children with Spina Bifida also qualify for special education resources under the Americans with Disabilities Act (ADA). States may also provide government-funded resources, such as California’s Department of Health Care Services (DHCS) which serves the Torrance and South Bay area.
Many American hospitals provide medical services for Spina Bifida patients through programs for children and those for people of all ages with spinal cord injuries. Services usually include surgery, physical/occupational therapy, and orthotics. Facilities in the Torrance and greater Los Angeles region include:
- Shriners for Children (Pasadena)
- Children’s Hospital Los Angeles
- Miller Children’s & Women’s Hospital (Long Beach)
Many people are unaware that the Veterans Administration (VA) has a special Spina Bifida program. The benefits are reserved for Spina Bifida patients who are the children of Korean War and Vietnam War veterans. While these folks are now well into adulthood, they may still be eligible.
BrightStar Care of Torrance is contracted with the VA to serve as a provider of home care services for its Spina Bifida program recipients. Qualified enrollees may receive reimbursement for caregiver visits and other medical services and supplies.
Awareness & Research
While Spina Bifida cannot be prevented altogether, education and awareness can help reduce risk for expecting mothers and highlight resources for those already affected.
- Spina Bifida Association “Walk-N-Roll” – One of the nation's biggest Spina Bifida awareness campaigns is the annual “Walk-N-Roll." The campaign features regional walks that generate funding for medical research while also raising general community awareness. BrightStar Care of Torrance is a proud sponsor of this year’s Southern California walk on October 25th 2020. BrightStar Care’s unique blend of caregiver and skilled nursing (RN, LVN) services perfectly addresses many Spina Bifida patient needs!
- Prenatal educational programs for expecting mothers – Researchers believe genetic and environmental factors increase risk of developing Spina Bifida. But they also say nutrition can play a role and specifically cite folic acid deficiencies as a possible contributor. Therefore, prenatal educational programs help to promote healthy diets for expecting mothers and reduce the risk of Spina Bifida.
- CDC – The Centers for Disease Control and Prevention (CDC) is among the foremost expert on Spina Bifida in the United States. The CDC funds multiple Spina Bifida research projects through the affiliated Centers for Birth Defects Research and Prevention (CBDRP).
- Mayo Clinic: Spinal Cord Injury Research Program – As referenced earlier, children’s hospitals across the country have programs for treating Spina Bifida patients. But many also lead research programs. For example, the Mayo Clinic is particularly active in conducting research and clinical trials through its “Spinal Cord Injury Research Program.”
Americans have become more active in supporting disease-prevention and treatment causes over recent years. From Alzheimer’s to cancer, millions of people do their part to help with fundraising and awareness efforts. But Spina Bifida is not as front-and-center as many other diseases.
Fortunately, resources do exist for Spina Bifida patients and their loved ones. Public and private programs help to finance research, treatments, and support services. And home care agencies like BrightStar Care of Torrance are doing their part to contribute to the cause.
Be sure to support this year’s Spina Bifida “Walk-N-Roll” event [virtual due to COVID-19] by clicking HERE. And if you’re interested in learning about Torrance caregiver services for a friend or loved one, call BrightStar Care today for a free registered nurse assessment!