Cure SMA India supports families through care and counselling for the newly diagnosed children, informational care booklets, equipment pool, SMA Clinics, hospital support, patient advocacy, and many other direct family support services.
1. Family Counselling
Counseling is an essential component of support for families of patients with spinal muscular atrophy.
The diagnosis of SMA results in life-changing circumstances. Families can feel extremely stressed, worried, and frustrated throughout the diagnostic journey.
Parents often react initially with shock, disbelief, or denial. Acceptance of the diagnosis follows and many parents, especially mothers, feel guilt at having “given” this disorder to their baby. They are confused and frightened for their child regarding their development and future. Many parents typically feel isolated by these feelings.
At Cure SMA India, we counsel parents to facilitate their acceptance of the child’s diagnosis and adjust their expectations and lifestyle to take care of the child’s needs. The typical symptoms and course of SMA are explained. We build hope by referring to experiences of other SMA children and their parents who are dealing with similar challenges.
From helping to uncover a diagnosis and finding the right doctors and treatments to learning about everyday coping tips and connecting them to similar families, we provide the tools and resources needed to face the challenges of living and thriving with SMA.
2. Genetic Counselling
Spinal Muscular Atrophy is a severe neuromuscular genetic disorder which is usually inherited. Parents have little or no knowledge about it and most of them hear for the first time. Genetic counseling can help them in better understanding of the test results, know the cause and pattern of inheritance, and treatment options. It also makes them aware that there is a chance for the disorder to happen again and the need for carrier testing of all people in the family and paves the way for effective reproductive counseling. It also helps families to deal with the disorder towards prevention.
Genetic carrier testing is now available in many leading hospitals in India.
3. SMA Clinics
Spinal Muscular Atrophy is a progressive disease that affects the part of the nervous system controlling voluntary muscle movement. Symptoms of SMA may include:
muscle weakness and decreased muscle tone
problems with eating and swallowing
delayed gross motor skills
spontaneous tongue movements
scoliosis (curvature of the spine)
A multidisciplinary approach is the key element in the management of SMA patients with the input of specialists from different areas of care and intervention
Cure SMA India started the concept of SMA clinics to facilitate access to comprehensive care by working with a network of specialists such as neurologists, developmental pediatricians, Orthopedicians and spine surgeons, gastroenterologists, and physiotherapists. This multi-disciplinary care approach allows patients and their families to monitor various aspects of disease progression and, when possible, provides anticipatory care and minimizes trips to medical appointments.
At present, we have SMA clinics in Kolkata, Delhi, Cochin, Chandigarh and we plan to start in many more cities.
4. Financial Support
We receive no government funding and rely on contributions from our members. We provide financial support to the poor, eligible patients for assistive devices, surgeries, hospitalization, etc.
5. Awareness activities
Despite SMA being a common genetic cause of death amongst babies, awareness of the condition is limited. We aim to raise awareness and understanding of SMA amongst the affected kids and families, doctors, and importantly amongst decision makers to show the need for the provision of treatment and the highest standards of care for all the SMA affected children and adults.
We publish booklets, brochures and leaflets designed to help better understanding of the underlying causes, symptoms, and progression of the different forms of SMA and distribute among our members, doctors, and the public.
Cure SMA India organized its first National Conference in 2019 with specialized doctors, post graduate trainees, SMA affected individuals and families. It provided a unique opportunity to interact and gain important knowledge about the condition as well as treatment and therapy options.
Members of Cure SMA India attend various conferences on child neurology, pharmacy, and so on to meet like-minded individuals from across the country to learn, discuss thoughts, network, share ideas, and to ignite motivation.
Webinars have been conducted on topics of interest to share knowledge on best practices and management of orthopedic, spinal, nutritional, and physiotherapy aspects of SMA patients.
Regional Meetings – The health and well-being of people living with SMA, their loved ones and those working to improve their lives are always our top priorities at Cure SMA India. We organize local level meetings in different cities where parents and other important family members can come together. Few specialist doctors are invited to talk on concerned topics. The family members discuss their feelings and problems about various day to day issues and seek advice from the specialists and other experienced families.These meetings are an opportunity to learn, understand and create meaningful connections and facilitate relationships to benefit all within our network. This makes them feel that they are not alone in this journey.
Social media is a fantastic tool to help spread the message about SMA. There is a thriving online SMA community which has played a crucial role in raising awareness and exchanging ideas and experiences with others who have SMA and thus help and support one another. It helps you to feel less isolated and more in control of your journey. You can visit Cure SMA India on Facebook, Twitter, and Instagram.
It is always an uplifting experience to hear stories from SMA warriors and their families on how they are continuing to deal with the condition and grow stronger. They show that they do not let their disability come in the way of their success and prove that there is life beyond any painful curves that life throws at us. It also helps to hear the family’s point of view as families are an integral part of SMA warriors’ efforts in dealing with the innumerable physical and mental challenges.