Media Kit

What inspired you to write Doctor to Patient: Living with Stiff Person Syndrome, and how has your experience as both a doctor and a patient shaped your perspective on SPS?

I felt that it was essential to write a book that would serve as a lifeline for those grappling with Stiff Person Syndrome (SPS) and for the loved ones who stand by their side—spouses, relatives, and friends. Chronic health conditions like SPS don’t just challenge the individual; they ripple out, affecting every corner of their life and the lives of those nearby.  

I wanted to make a meaningful difference for those living with SPS, which requires a deep understanding of how this condition permeates every facet of their lives. Yet, even with my years of education, rigorous training, and experience as an SPS patient, given the rarity of the syndrome, I sometimes question whether such an understanding is even possible.

The recent documentary on Amazon Prime,  I Am: Celine Dion,  has cast a spotlight on Stiff Person Syndrome. Until now, many people were unfamiliar with SPS.  Can you explain the biggest misconceptions about the condition and what you hope readers take away from your book?

The documentary was both heartbreaking and raw, exuding sadness yet filled with hope. Witnessing her determination to lead a meaningful life and not let the syndrome defeat her was inspiring. Her words resonated with the Stiff Person Syndrome community. I’ve been part of this group since 2017, and like other members, I completely understood her struggles.

One of the most eye-opening revelations is realizing that Stiff Person Syndrome (SPS) is invisible to the naked eye. It is a chronic, unseen condition that remains unnoticed unless there are visible spasms or severe stiffness. Just by looking at me, you wouldn’t grasp the daily challenges I face because the disease is not apparent to others. Invisible conditions are often misunderstood by loved ones and dismissed by family, friends, and even the medical community. Since SPS symptoms are not always visible, people tend to assume the signs are fabricated or imagined.  After all, seeing is believing, right? Hopefully, besides highlighting SPS, the book dispels misconceptions and the pressure to prove that one is truly ill.

As a medical professional, how did your diagnosis change your approach to interaction with others and advocacy for rare diseases?

In my situation, it took over ten years of medical tests and visiting numerous specialists before the diagnosis of Stiff Person Syndrome was made. It’s crucial to reduce the time it takes to diagnose such conditions. Many people with rare diseases often encounter major challenges, such as delayed diagnosis, limited treatment options, a lack of awareness among healthcare professionals, and funding cuts in research, resulting in slower progress in the development of new treatments, causing compromised health and quality of life.  While awaiting help, some people with rare diseases may give up or spiral into deep depression, producing an escalation in symptoms.  Ultimately, I have a clearer understanding that advocating for rare diseases ensures that, even though these conditions affect a small group of people, patients must still receive the necessary support and attention they deserve. It’s inhumane to do anything less.  No one deserves to be forgotten.

What were some of the biggest challenges you faced while writing this book, both physically and emotionally?

Writing this book was a toilsome and arduous process that occurred in various places. I wrote while lying in bed, riding in the car, taking short walks, watching movies, and tapping away on my cell phone. I wrote whenever I could. Notes were all over the office floor, taped to the wall, and scattered across my desk. On some days, I ended up overworking myself, and I would have to take a break for several days or even weeks.

Then, at times, the spasms would be so severe that I was unable to organize my thoughts. These stretches made it impossible for me to work on it, and weeks would pass between attempts. On occasions, the physical pain of the spasms weighed so heavily on me that, during my toughest moments, I found myself contemplating giving up on the project entirely, feeling incapable of ever finishing it. But I refused to give up. I knew that the information was important. Nonetheless, one day, it was done.

What advice would you give to others living with chronic diseases, Stiff Person Syndrome or rare diseases in general, especially when navigating the healthcare system?

Throughout your life, you’ll face moments when crucial health decisions are necessary. During such times, having a doctor who is compatible, skilled, and devoted—showing honesty, compassion, empathy, and respect—can be invaluable. The partnership between you, as an informed patient, and a dedicated physician can significantly enhance, reduce, or resolve various health issues. However, locating a doctor with these attributes can be challenging and time-consuming. Despite this, as the leader of your healthcare journey, the ultimate choice is yours on who will deliver the care you deserve. Remember, this concerns your health and well-being. Don’t let a single doubtful opinion deter you from exploring all possible options for managing your health and finding relief. With determination and persistence, you can find a healthcare provider who aligns with your vision of holistic healing.

What is your philosophy for daily life?

Focus more on discovering your purpose and less on dwelling on your trauma. The pain and discomfort are real; acknowledge them but don’t allow them to define you. The insights you gain are not just for your benefit but, more importantly, to offer comfort, empathy, and compassion to others. The important thing is to understand that your life, like all lives, holds meaning and purpose. Life seldom unfolds as planned.