# SASHA Foundation

> SASHA Foundation | Spina Bifida Support & Awareness Network


## Posts

- [Living with Spina Bifida: Dr Rahul Salve and Rushil’s Story](https://www.foundationsasha.org/living-with-spina-bifida-dr-rahul-salve/): Meet Dr Rahul Salve, doctor, parent, husband, and father, whose son, Rushil, has Spina Bifida. Dr Rahul Salve has the unique privilege of being a doctor. Drawing on his firsthand experience of bringing up a son with Spina Bifida, Dr Rahul Salve wants to share what his son and his life have been like so others can better understand that experience. Dr Rahul Salve personally wrote his story, and the Q&A section was compiled by the article’s author. Spina Bifida: Dr Rahul Salve and Rushil’s Story I am Dr Rahul Salve, a Paediatrician, and my wife is an Anaesthetist. Both of us […]
- [Understanding Spina Bifida and Its Impact on Bladder Function](https://www.foundationsasha.org/spina-bifidas-impact-on-bladder-function/): Understanding the impact of Spina Bifida on bladder function is fundamental for developing effective management strategies tailored to individual needs. Self-catheterization: Benefits, Care & Psychological Aspects Spina Bifida, a congenital condition characterized by the incomplete closure of the spinal column, can profoundly influence an individual’s bladder control and overall urinary function. This condition arises during foetal development, leading to varying degrees of neurological impairment that can affect the spinal cord and associated nerve pathways. In many instances, individuals with Spina Bifida experience neurogenic bladder, a condition where the nerves that control bladder function are damaged or non-functional, resulting in altered bladder […]
- [Preparing for Clean Intermittent Self-Catheterization: The Three Most Important Steps](https://www.foundationsasha.org/three-important-steps-self-catheterization/): The three most important steps for Clean Intermittent Self-Catheterization are: 3 Steps for Infection-Free Self-Catheterization Private Part Hygiene One of the most critical aspects of intermittent self-catheterization is ensuring proper private part hygiene to prevent infections and maintain overall health. The genital area can harbour bacteria and other microorganisms that may pose a risk if introduced into the urethra during the catheterization process. Cleaning the area thoroughly during shower is essential to reduce the likelihood of urinary tract infections (UTIs). If the person has had an episode of diarrhoea and soiled his or her diaper/underwear, the genital area and buttocks should […]
- [Self-Catheterization in a Toilet: Females Who Can Stand](https://www.foundationsasha.org/self-catheterization-independent-females/): Mastering intermittent self-catheterization: A step-by-step guide for independent females who can stand without support. This guide covers everyone with a bladder dysfunction who wants to or has to self-catheterise to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Females Who Can Stand This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective techniques, preparation […]
- [Self-Catheterization in a Toilet: Males Who Can Stand](https://www.foundationsasha.org/self-catheterization-independent-males/): Mastering intermittent self-catheterization: A step-by-step guide for independent males who can stand without support. This guide covers everyone with a bladder dysfunction who wants to or has to self-catheterise to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Males Who Can Stand This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective techniques, preparation […]
- [Self-Catheterization in a Toilet: Female Wheelchair Users](https://www.foundationsasha.org/self-catheterization-female-wheelchair-users/): Mastering intermittent self-catheterization: A step-by-step guide for independent females who use wheelchairs or mobility support. This guide covers everyone with a bladder dysfunction who wants to or has to self-catheterise to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Female Wheelchair Users This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective techniques, preparation […]
- [Self-Catheterization in a Toilet: Male Wheelchair Users](https://www.foundationsasha.org/self-catheterization-male-wheelchair-users/): Mastering intermittent self-catheterization: A step-by-step guide for independent males who use wheelchairs or mobility support. This guide covers everyone with a bladder dysfunction who wants to or has to self-catheterise to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Male Wheelchair Users This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective techniques, preparation […]
- [Self-Catheterization on a Bed: Dependent Females](https://www.foundationsasha.org/self-catheterization-bed-dependent-females/): Mastering intermittent self-catheterization: A step-by-step guide for parents to catheterise dependent females on a bed. This guide covers everyone with a bladder dysfunction who wants to or has to catheterise a dependent female to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Dependent Females This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective […]
- [Self-Catheterization on a Bed: Dependent Males](https://www.foundationsasha.org/self-catheterization-bed-dependent-males/): Mastering intermittent self-catheterization: A step-by-step guide for parents to catheterise dependent males on a bed. This guide covers everyone with a bladder dysfunction who wants to or has to catheterise a dependent male to evacuate urine. Our guide has helpful solutions for everyone, from beginners to seasoned catheterisers. How to Self-Catheterise Safely: Dependent Males This comprehensive, detailed guide explores Clean Intermittent Self-Catheterization (CISC) for individuals with Spina Bifida, focusing on bladder management, hygiene practices, and selecting the right catheter. CISC enhances bladder control, reduces the risk of urinary tract infections, and empowers individuals with autonomy over their health. Learn about effective […]
- [What is Chiari Malformation? How does it affect you?](https://www.foundationsasha.org/chiari-malformation/): As previously explained, Myelomeningocele’s two most common conditions associated with the brain are Hydrocephalus and Chiari Type II Malformation, also known as Arnold Chiari Malformation (pronounced key – ar- ee). This article will discuss Arnold Chiari Malformation in a person with Spina Bifida. What is Chiari Malformation? Chiari malformation is a structural abnormality where brain tissue from the lower back of your skull extends into the spinal canal. This occurs because the skull is smaller than expected, causing the cerebellum to grow downward through the foramen magnum, an opening at the base of the skull. An Austrian pathologist named Professor Chiari discovered […]
- [Hydrocephalus and Shunts in the Person with Spina Bifida](https://www.foundationsasha.org/hydrocephalus/): Myelomeningocele’s two most common conditions associated with the brain are Hydrocephalus and Arnold Chiari II Malformation (pronounced key – ar- ee). In this article, we will discuss Hydrocephalus and the need for shunts in a person with Spina Bifida. What is Hydrocephalus? The brain continuously produces and is surrounded by a clear, salt-water-like special fluid, called cerebrospinal fluid (CSF) (seh·ruh·broh·spine·uhl floo·uhd). A group of special cells called choroid plexus are located within the fluid-filled pockets, called ventricles and are responsible for most of the CSF’s production. CSF protects and nourishes the brain. The brain contains four ventricles—two lateral ventricles located on […]
- [What is Lipomyelocele? What are the causes?](https://www.foundationsasha.org/lipomyelocele/): Lipomyelocele is one of the most common closed spinal birth defects. It is seen in the thoracolumbar junction (the part of the spine that connects the thoracic spine to the lumbar spine) and usually presents as a fatty subcutaneous mass. What is Lipoma? A lipoma is a non-cancerous, fatty lump that grows under the skin. Lipomas are soft, round or oval-shaped, and usually move easily when touched.  What is Lipomyelocele? Lipo = fatMyelo = the nerves of the spinal cordCele = a swelling A Lipomyelocele is a type of lipoma that occurs with Spina Bifida. A Lipomyelocele is a fibrous fatty tissue mass that […]
- [What is Tethered Cord Syndrome? Is the Surgery Safe?](https://www.foundationsasha.org/tethered-cord-syndrome/): This article will discuss Spinal cord tethering and Tethered Cord Syndrome (TCS). I will also answer a common question we get, “Should I get my child operated?” Spinal Cord Tethering Spinal Cord Tethering occurs when the spinal cord becomes attached to the spinal column through surrounding structures. Normally, the spinal cord hangs loosely in the canal, allowing it to move freely with growth, bending, and stretching. However, this movement is restricted in a tethered cord, as the cord is pulled tightly at one end. This reduces blood flow to the spinal nerves and causes damage to the spinal cord due to […]
- [How Will the Location of My Child’s Myelomeningocele Affect Him/Her?](https://www.foundationsasha.org/myelomeningocele-functional-level/): In this article, we will answer the most common question we get, “Will my child walk?” MRI Level/ Functional Level in Myelomeningocele Myelomeningocele affects the development of a child’s brain and spine differently than other children. When you first consult with doctors and nurses, they might mention your child’s MRI lesion level. This term refers to the lesion’s (Spina Bifida’s) location on your child’s spine as seen on scans. We use this information during antenatal consultations to predict your child’s condition at birth. After your baby is born, healthcare providers will observe and assess their movements to understand how myelomeningocele affects […]
- [What are the Orthopaedic Issues Related to Spina Bifida?](https://www.foundationsasha.org/orthopaedic-issues-related-to-spina-bifida/): In this article, we will discuss, what are the orthopaedic issues related to Spina Bifida briefly. Orthopaedic Issues Related to Spina Bifida Children with Spina Bifida often face orthopaedic challenges like clubfoot, hip dislocation, spinal curvatures, and contractures in the knee, hip, and ankle, which can affect their walking ability. During school years, growth can lead to additional deformities such as spinal curvature and related neurological issues. Contractures in the hip, knee, and ankle are common. As these children grow and their body proportions change, walking becomes more physically demanding. Regular monitoring and early intervention are essential to manage these orthopedic […]
- [What is Bowel Irrigation or TAI and Digital Evacuation?](https://www.foundationsasha.org/bowel-irrigation-or-digital-evacuation/): In this article, we are going to cover what is bowel irrigation or TAI and digital evacuation. People with Spina Bifida have bowel dysfunction, which causes this issue. The procedures below often manage conditions like chronic constipation, faecal incontinence, and neurogenic bowel. Bowel Irrigation Or TAI For most people, emptying the bowel is straightforward. However, it doesn’t work smoothly for people with Spina bifida. If you experience constipation, bowel leakage, or spend too much time on the toilet, bowel irrigation might be one of the suitable treatment options. This procedure varies from person to person and country to country depending upon, […]
- [What is Clean Intermittent Self Catheterization (CISC)?](https://www.foundationsasha.org/what-is-intermittent-self-catheterization/): In this article, we are going to cover what Intermittent Self Catheterization is and how it benefits individuals who void urine on their own. Intermittent Self Catheterization helps people with Spina Bifida manage bladder dysfunction, which causes issues in emptying the bladder. Clean Intermittent Self Catheterization (CISC/IC)? Clean Intermittent Self Catheterization (CISC/CIC/IC) closely mimics natural urination and is an excellent alternative. People who can’t urinate on their own use a tube, called a catheter, to remove urine from the bladder. They practice this multiple times a day, as and when the bladder fills up. This process is called Clean Intermittent Self-Catheterisation […]
- [Effects on Bladder and Bowel Dysfunction](https://www.foundationsasha.org/bladder-and-bowel-dysfunction/): Spina Bifida has a waterfall effect on a person’s body and causes many dysfunctions. In this article, we will discuss the effects on bladder and bowel dysfunction. Spina Bifida’s Effects on Bladder and Bowel Dysfunction? Spina Bifida damages the spinal nerves that connect the brain to the lower organs, causing neurogenic bladder and neurogenic bowel dysfunction in up to 80% to 90% of individuals. What is Spina Bifida? Spina Bifida is a birth defect where the spine and the spinal cord don’t close properly. This defective closure can arise anywhere along the spine, from the neck to the rump bone and […]
- [Spina Bifida Guide for New Parents](https://www.foundationsasha.org/spina-bifida-guide-for-new-parents/): In this article, we will discuss the challenges new parents may encounter when raising a child with Spina Bifida (SB). This Spina Bifida guide aims to support new parents by providing insights and practical advice. It’s important to understand that Spina Bifida presents differently in each child, so your child may experience some or all of these challenges. Our Child has Spina Bifida When you first learn that your baby has SB, there is a lot to understand and many decisions to make quickly. Most diagnoses are made by obstetricians or maternal-fetal medicine specialists. However, it’s crucial to consult a SB […]
- [What is Folic Acid? And how much to take?](https://www.foundationsasha.org/folic-acid/): People often ask what is folic acid and how much to take. They say supplementation of folate before conception reduces the risk of Spina Bifida. Experts do not know the exact cause, but they have identified maintaining healthy levels of folate (called folic acid when taken via a supplement) as a key factor in prevention. What is Folic Acid? Folate is the natural form of vitamin B9, a water-soluble vitamin essential for various bodily functions. It plays a crucial role in forming DNA and RNA, which are the building blocks of cells. Folate helps metabolize proteins and form red blood cells, aiding […]
- [What is Spina Bifida Occulta?](https://www.foundationsasha.org/spina-bifida-occulta/): Many adults receive a diagnosis of Spina Bifida Occulta, a mild form of Spina Bifida. However, the scarcity of information, resources, and awareness often leads to frustration. What is Spina Bifida Occulta? Spina Bifida Occulta (SBO), is the mildest and most common form of SB. People often call it “hidden Spina Bifida” because about 15 per cent of healthy individuals have it without knowing. SBO usually does not cause harm and has no visible signs. The spinal cord and nerves are usually normal and remain in the spine, unlike the other types of SB. Imaging tests for other conditions often incidentally discover […]
- [Are Genetics and Spina Bifida Related?](https://www.foundationsasha.org/genetics-and-spina-bifida/): In this topic, we are going to discuss genetics and Spina Bifida (SB). While it’s impossible to completely prevent Spina Bifida, you can take steps to reduce the risk. Understanding the role of genetics in pregnancy can aid in family planning. If you have a family history of Spina Bifida and are considering starting a family, consulting a genetic counsellor about pregnancy, potential risks, and available tests is advisable. Genetics and Spina Bifida Yes, genetics and spina bifida are closely related, but the condition is considered multifactorial, meaning it is caused by a complex mix of genetic and environmental factors. What […]
- [What is Spina Bifida?](https://www.foundationsasha.org/what-is-spina-bifida/): Spina Bifida (SB) is the most common permanently disabling birth defect that is associated with life. Approximately 4-5 individuals in every 1000 births in India have SB. What is Spina Bifida? It’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine.” Typically occurring within the first 28 days of pregnancy while the neural tube is forming, SB often occurs before a woman knows she is pregnant.  Commonly referred to as the “snowflake condition” of birth defects because no two cases are the […]

## Pages

- [Refund Policy](https://www.foundationsasha.org/refund-policy-sasha-foundation/): Effective Date: 23 February 2026Website URL: https://www.foundationsasha.org/Foundation Name: Spina Bifida Afflicted for Strength Haleness and Awareness (SASHA) Foundation General Policy The Spina Bifida Afflicted for Strength, Haleness, and Awareness (SASHA) Foundation deeply values the generosity of our donors. Donations help us continue our mission of raising awareness and supporting individuals affected by Spina Bifida. As a general rule, all donations made to the SASHA Foundation are non-refundable. However, we understand that errors may occur and will review refund requests on a case-by-case basis. Eligibility for Refunds Refunds may be considered under the following circumstances: Refunds will not be provided for donations […]
- [Terms & Conditions](https://www.foundationsasha.org/terms-conditions-sasha-foundation/): Effective Date: 23 February 2026Website URL: https://www.foundationsasha.org/Website Name: Spina Bifida Afflicted for Strength Haleness and Awareness (SASHA) Foundation Acceptance of Terms By accessing and using this website, you agree to comply with and be bound by these Terms and Conditions. If you do not agree, please discontinue use of the website. Eligibility Collection of Personal Information We collect personal information directly from users, including: Users may also opt in to receive newsletters and emails from us. Use of Information Security and Login Donations Receipts and Tax Exemption Certificates User Responsibilities Data Protection and Privacy Personal information supplied to us while using […]
- [Donate](https://www.foundationsasha.org/donate/): 300,000+ Births Globally Every year, over 160,000 children globally are born with Spina Bifida, a complex neural tube disorder 100,000+ Births in India Every year, over 100,000 children are born in India with Spina Bifida, 4 or 5 children in every 1000 births 1+ Early Deaths At least 1 of every 4 or 5 children born with severe Spina Bifida dies in the first month or year of life. 4.97+ Average Surgeries On average, a person with Spina Bifida has 4.97 surgeries in their lifetime. A complex multisystem comorbidity
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- [Ways to Give](https://www.foundationsasha.org/ways-to-give-donate/): 300,000+ Births Globally Every year, over 160,000 children globally are born with Spina Bifida, a complex neural tube disorder 100,000+ Births in India Every year, over 100,000 children are born in India with Spina Bifida, 4 or 5 children in every 1000 births 1+ Early Deaths At least 1 of every 4 or 5 children born with severe Spina Bifida dies in the first month or year of life. 4.97+ Average Surgeries On average, a person with Spina Bifida has 4.97 surgeries in their lifetime. A complex multisystem comorbidity Giving Made Simple Spina Bifida Afflicted for Strength, Haleness, and Awareness (Sasha) Foundation, proudly […]
- [Disclaimer](https://www.foundationsasha.org/disclaimer-sasha/): Last updated December 29, 2024 The website is owned by, Spina Bifida Afflicted for Strength, Haleness and Awareness (SASHA) Foundation. Website Disclaimer The information provided by Spina Bifida Afflicted for Strength, Haleness and Awareness (SASHA) Foundation (‘we’, ‘us’, or ‘our’) on https://www.foundationsasha.org/ (the ‘Site’) is for general information purposes only. All information on the site is provided in good faith, however, we make no representation or warranty of any kind, express or implied, regarding the accuracy, validity, reliability, availability, or completeness of any information on the Site. UNDER NO CIRCUMSTANCES SHALL WE HAVE ANY LIABILITY TO YOU FOR ANY LOSS OR […]
- [404 Error](https://www.foundationsasha.org/404-error-woops/): Sasha Foundation Spina Bifida Afflicted for Strength, Haleness & Awareness (Sasha) Foundation is a non-profit that helps with Spina Bifida and all the issues attributed to Spina Bifida, chronic pain management, sleep & mental health issues. Let us help you, and together, let’s help others. Services Click to read Blog Click to read
- [Privacy Policy](https://www.foundationsasha.org/privacy-policy/): Who we are Our website address is: https://www.foundationsasha.org and this is our privacy policy. Comments When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection. An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment. Media […]
- [Blog](https://www.foundationsasha.org/blog/): Latest Blog Articles
- [Team](https://www.foundationsasha.org/team/): Our Amazing Team Vivek and his parents have gone through hardships in life, not knowing what hurdles to expect and how to navigate them. There is no awareness about Spina Bifida, and the healthcare givers provided no instructions on what disabilities it will further create and how to counter them medically, mentally and socially. Since 2004, Vivek and his family have been bridging this gap by helping and guiding people with Spina Bifida and their families, on various aspects of this disorder. At Sasha, our amazing team is dedicated to supporting individuals and parents affected by Spina Bifida. With passion and expertise, […]
- [Contact](https://www.foundationsasha.org/contact/): Phone Number +918233419297 Our Location Shree Enclave, Niwaru Road, Jhotwara, Jaipur 302012 Open Hours Mon – Fri : 9:00 – 5:00 Legal Name Spina Bifida Afflicted for Strength Haleness and Awareness Foundation CIN Number U88100RJ2024NPL098904 PAN Number ABOCS8859H Section 8 License 162653 80G Certificate ABOCS8859HF20251 Contact Us
- [Services](https://www.foundationsasha.org/services/): Catheter Training Our catheter training empowers individuals with Spina Bifida to master Clean Intermittent Self Cathetrization (CISC). This skill promotes independence and helps maintain health. We guide you every step of the way through our resources, information, guidance and support. With our hands-on training, youʼll learn effective techniques and best practices. Our experienced instructors provide personalized support, ensuring you feel confident and comfortable. Say goodbye to worries and hello to freedom! We guide you on minimizing Urinary Tract Infections (UTIs) and managing them when they occur, along with catheterization. UTIs are like occupational hazards; you can reduce their frequency but can’t […]
- [About](https://www.foundationsasha.org/about/): Our Purpose: Uniting for Spina Bifida At Sasha, we unite individuals and families impacted by Spina Bifida. Our goal is to provide unwavering support, valuable resources, and a strong community. We assist those impacted by Spina Bifida by offering information, care, emotional support, practical help, and medical assistance. Moreover, we support the families and carers of these individuals. Our mission is to raise awareness, promote strength, and advocate for the health and well-being of those living with Spina Bifida. Join us on our journey to make a positive impact and empower lives. Our Commitment At Sasha, our commitment drives everything we […]
- [Home](https://www.foundationsasha.org/): Other Internet Resources Our Inspiring Journey Spina Bifida Afflicted for Strength, Haleness, and Awareness (Sasha) Foundation, proudly bearing License Number 162653, is a dedicated non-profit organization in India, legally registered as a Section 8 Company under the Companies Act, 2013. At Spina Bifida Foundation Sasha, our journey began with the determination to provide strength, support, and awareness for individuals and families affected by Spina Bifida. We believe in fostering a community where everyone feels empowered to live their best lives, regardless of the challenges they may face. Through our various programs and resources, we aim to create a world where Spina […]

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