My Quest to Transform Dystonia Treatment in India

 

Dr. Sagar Betai

As a neurosurgeon, I've seen firsthand the devastating impact that dystonia can have on patients' lives. This neurological movement disorder, which causes involuntary muscle contractions and abnormal postures, affects millions of Indians - including far too many who suffer in silence, unable to access the care they need.

For the past decade, I've made it my mission to change that. To bring hope and healing to the dystonia community in India by pioneering cutting-edge treatments and making them accessible to all who need them. It's been a long and challenging journey, but one I wouldn't trade for anything. Because every patient I treat, every life I help transform, reminds me why this work matters so deeply.

A Personal Mission

My journey began over ten years ago, when I first encountered patients struggling with dystonia in my Ahmedabad clinic. I was struck by their resilience in the face of such a debilitating condition - the way they fought each day to perform basic tasks that most of us take for granted, like walking, writing, or even just holding their head up straight.

But I was also frustrated by the lack of effective treatment options available in India at the time. While patients in other countries had access to advanced therapies like deep brain stimulation and focused ultrasound, most Indians with dystonia were left to make do with medications that often came with severe side effects and limited relief.

I knew I had to do something. I couldn't just stand by while so many suffered needlessly. So I made a decision that would change the course of my career - and my life. I decided to dedicate myself to bringing the world's best dystonia treatments to India, no matter what it took.

A Decade of Learning

Over the next ten years, I embarked on a global quest for knowledge, determined to learn from the world's leading experts in dystonia treatment. I traveled to Japan and other countries, training under pioneers in the field and studying cutting-edge techniques like radiofrequency (RF) ablation of the pallidothalamic tract (PTT) and ventral intermediate nucleus (Vim).

It was a steep learning curve, but I was driven by a sense of purpose that kept me going through the long hours and countless challenges. With each new skill I mastered, each innovative approach I learned, I could feel myself getting closer to my goal of transforming dystonia care in India.

But I also knew that simply importing these techniques wholesale wouldn't be enough. To truly make a difference, I had to adapt them to the unique needs and constraints of the Indian healthcare system. I had to find ways to make them not just effective, but accessible and affordable for the average patient.

Bringing Hope Home

That's when the real work began. Over the past five years, my team and I have poured our hearts and souls into developing a comprehensive dystonia treatment program tailored to the Indian context. We've innovated at every step of the process, from surgical planning to post-operative care, always with an eye toward maximizing impact while minimizing costs.

One of our key breakthroughs has been adapting RF ablation techniques to be performed with minimal invasiveness and at a fraction of the usual price. By using more readily available equipment and streamlining our protocols, we've been able to bring the cost of treatment down to around 1/10th of what it would typically be in India - putting it within reach for far more patients.

The results have been nothing short of incredible. We've successfully treated numerous patients with advanced dystonia, many of whom had all but given up hope after years of failed therapies and mounting medical bills. To see the joy and relief on their faces as they regain control of their bodies and their lives - it's a feeling that never gets old.

I think of patients like Priya (name changed for patient privacy), a 25-year-old banker who came to me with severe cervical dystonia that had left her in constant pain and on the brink of losing her job. After undergoing RF ablation with our adapted technique, she experienced a 70% reduction in abnormal neck movements and an 85% improvement in her dystonia-induced pain within just one month. She's now back at work and off all medications - a true testament to the power of accessible, targeted treatment.

A Vision for the Future

But as much as we've accomplished, I know there's still so much more to be done. Dystonia remains a vastly undertreated condition in India, with countless patients still suffering in silence, unaware that relief is possible.

That's why, in the coming years, I plan to establish a comprehensive training program to share our knowledge and techniques with doctors across the country. By empowering local physicians to provide world-class dystonia care in their own communities, we can exponentially expand access to treatment and give new hope to patients who have been left behind for too long.

It's an ambitious goal, but one I feel called to pursue. Because I've seen the difference that innovative, compassionate care can make in the lives of those battling dystonia. I've witnessed their courage and resilience in the face of incredible odds. And I've been inspired by their unwavering determination to live life to the fullest, no matter what challenges they face.

A Promise to Patients

To all the dystonia warriors out there, I want you to know this: I see you. I hear you. And I will never stop fighting for you.

No matter how long it takes or how many obstacles we face, my team and I will keep pushing forward - keep innovating, keep advocating, keep working tirelessly to bring you the care and support you deserve. Because you are not alone in this battle. You have an entire community behind you, cheering you on and believing in your limitless potential.

Together, we will build a future where no Indian with dystonia has to suffer in silence or resignation. Where cutting-edge treatments are available to all who need them, regardless of income or geography. Where hope and healing are not luxuries, but fundamental rights.

That is my promise to you - and the driving force behind everything I do. And with your support and partnership, I know we can make it a reality.

So let us move forward together with renewed resolve and unwavering hope. Because a brighter tomorrow is on the horizon - and it starts with us.

With gratitude and determination,