Services

OUR BEST

SERVICES

We support SMA families through our newly diagnosed care and counselling, informational care booklets, equipment pool, SMA camp support, hospital support, patient advocacy and many other direct family support services.

  • Counselling of parents and children :

    The very news & diagnosis report confirming that your child has one of the most life threatening neuro muscular genetic disorder Spinal Muscular Atrophy shatters every parent. It is emotionally draining & depressing to see your child slowing being pushed towards death as this disease is progressive in nature and as parents you cannot do anything about it.

    This is where we at Cure SMA Foundation of India try to counsel the parents and share many other challenging stories about other children (SMA Warriors) & their parents who have learnt to deal with day to day challenges despite all odds. The very understanding that “you are not alone” gives them a ray of hope to sail through the situation. Thus, lot of time, years are saved as parents begin try & implement SMA protocol as per guidance provided.

  • Genetic Screening :
    1. In line with our vision & mission, it is our commitment & endeavor to create awareness about mandatory genetic screening. Nothing can be more devastating than seeing your child, your treasure to go through the pain, suffering & challenges caused by SMA.

    Thus, we strongly recommend that all young adults go through genetic screening to know any potential risk of being carrier of genetic rare diseases.

    Genetic carrier testing is now available in many leading hospitals in India.

  • SMA Protocol :
    1. Early diagnosis & detection helps in early start of maintaining and managing SMA child’s health. SMA management & protocol is essential for all the children /newly diagnosed patients with aim to prolong the prognosis of the disease as an attempt to extend life.

    The protocol requires

    • Regular physiotherapy including chest physiotherapy,

    • Preventive methods for respiratory infections, managing respiratory infections,

    • Diet & nutrition management along with weight management,

    • Routine tests, checkups – PFT, Calcium, Vit D3, B complex levels, Bone density check.

    • Regular & timely vaccinations (mandatory flu vaccination, pneumonia vaccination)

    • Scoliosis management- regular checkup & monitoring of cobb’s angle, use of spinal braces, close monitoring to perform spine surgery during golden period.

    • Selection & use of right type of braces, AFOs, strander.

    • Right posture, ergonomics,

    • Use of assistive devices such as bipap, cough assist, oxygen concentrator, oxypulsemeter.

  • SMA Clinic :
    1. We started the concept of SMA Clinics in 2017 in Kolkata in collaboration with Peerless Hospital and B K Roy Research Centre. Every quarter all the SMA warriors in West Bengal region are called to go through all the routine checkups by a team of multidisciplinary doctors ranging from Neurologists, Developmental pediatricians, Spine Surgeons and Orthopedicians, Gastroenterologists and physiotherapists. Mandatory pulmonary function test is done for all children. Orthotists from Kare Prosthetics and Orthotics, a Bangalore based Speciality Orthotic Service Provider also visit Kolkata annually and provide guidance on the use of orthotic devices and design the same for those in need.

    Cure SMA Foundation of India soon plans to start SMA clinics in other locations/cities.

  • Selection of mobility Aids, Spinal Braces, Strander, Wheel Chairs :

    All experienced parents provide guidance about right use of mobility aids & devices. Videos, pictures and vendor contacts are shared to get the right solution. The experience of parents along with the guidance of doctors give way to best solution.

  • Managing challenges in SMA child’s education :

    In India we go through many challenges in schools & colleges related to accessibility & inclusiveness apart from dealing with the progressive disease & low immunity levels. Ideas about dark pencils, erasers with grip, spiral binding text books & note books, need for an attendant in school, training the attendant, availability & use of disabled friendly washrooms, and many more such topics are shared by experienced parents as guidance to meet day to day challenges in school.

 

Doing the right thing,
at the right time.