As you are aware that the spinal cord injury (SCI) is one the most catastrophic injuries known to mankind. SCI causes severe physical and physiological changes that require lifelong care and support. Nearly about a century ago, SCI was considered ‘an ailment not to be treated’ and most patients were left to die of its inevitable complications. We have come a long way since then. Today, our SCI patients can hope to live a long, healthy and socially productive life due to the application of the advanced scientific principles of care. Today urological causes are no longer the major cause of death in the developed world. However the situation in India continues to remain grim.
Though there has been tremendous growth in the number of spinal unit over last 3 decades, across India with the availability of safe spine surgery, yet there has poor recognition of the their Lifelong needs for continued bladder, bowel and sexuality care that affect the quality of their lives and their longevity badly. Unfortunately the concept of comprehensive Long term care for SCI patients has still not taken roots in our country. As a result patients remain neglected and deprived of their due care and technological advancements and face avoidable suffering. You can imagine the plight that of over 12-15 lakh SCI patients across country, there are only just over 30 rehabilitation centre in whole of India and all of them offer a total of about 1000 beds only for SCI rehabilitation.
SCI and its catastrophic effects on the urological and sexual health remain poorly understood and grossly neglected in our country. Most SCI patients continue to suffer from otherwise preventable urological complications. It is even shocking as the majority of the SCI patients are young people, in the peak of their youth. Negative impact of lack of appropriate urological care on this precarious population is immensely distressing. Besides, SCI patients living in the distant and remote areas find it difficult to follow due to economic and logistic reasons. It is unfortunate that they remain deprived of their due share of care.
Sexuality and fertility concerns of the SCI patients remain grossly unattended in our country. Young SCI patients continue to silently suffer and lose the precious opportunity of achieving their rightful and attainable sexual functions. There is gross ignorance and hesitation in approaching this sensitive topic.
Education is the key for bringing out the desired change in health and life of SCI population. Education provides the tools for change and sustaining improvement, to improve the quality of life and prevent avoidable complications. We are committed to newer and more conducive and acceptable ways of providing patient specific education, knowledge, training under supervision, and long term guidance to SCI patients and their families.
We have created an Educational Platform for online teaching and training for our SCI patients, about their urological and sexual health concerns, so that they understand and follow scientific and proper SELF-CARE practices and avoid unscientific, unsafe and unhealthy practices. Enlightened patient is the best option for a healthy future. Education and active participation is the key to prevention.
We invite all of you to partner us in this movement to bring the good and the long awaited change in the lives of the millions of our SCI and neurologically impaired patients across the country.
Please feel free to share your ideas and opinions
