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  • The SPSRF Staff

Voices of SPS: David Axelrod

Updated: Jun 28

My name is David Axelrod. I reside in Milford, Connecticut, and work as a Senior Talent Acquisition Specialist. But to truly know me, you need to understand my journey - a journey defined by resilience and the will to overcome adversities.

As a child, I was full of life, achieving a second-degree black belt in Tae Kwon Do and regularly participating in various sports. I enjoyed the thrill of mountain biking and the camaraderie of team sports. However, in 2001, my life took an unexpected turn when, at just 13 years old, I was diagnosed with a brain tumor.

Several years later, another invisible enemy surfaced: Stiff Person Syndrome (SPS). Unexplained, persistent symptoms plagued me for 14 years, with a misdiagnosed sea of conditions – from arthritis to fibromyalgia. My everyday reality was turned upside down by persistent spasms, debilitating fatigue, and episodes of intense abdominal spasms that felt like a vice gripping my torso.

Treatments were akin to a carousel ride – a dizzying, inconsistent rotation of possibilities. Some medications, like Valium and Baclofen, brought relief but came with their own challenges, like daytime drowsiness. Intravenous immunoglobulin (IVIG) treatments, a beacon of hope initially, became a source of disappointment after multiple unsuccessful attempts. Yet, amidst the medical ups and downs, I discovered comfort in non-medical treatments such as deep tissue massages and occupational therapy.

My mother's compassionate care was my beacon of light through this tumultuous journey. Her selfless dedication and unwavering support bolstered my strength, particularly when SPS turned my everyday tasks into daunting challenges. Her love and care, generously extended while simultaneously caring for my father with Parkinson's, was, and still is, the truest form of compassion.

While SPS may have reshaped my life, it hasn't dampened my spirits. I still find joy in the presence of my loved ones, in lending a helping hand and in capturing the world's beauty through my newfound passion for photography. SPS taught me to shift my focus, to emphasize not what I can no longer do but what I can achieve.

I found a community, an ally, in the Stiff Person Syndrome Research Foundation (SPSRF). I envision SPSRF as a driving force that fosters research, awareness, education, and advocacy.

I am excited to contribute to this mission as the Chair of the annual SPS Conference and co-Chair of the SPSRF's Patient Advisory Committee.

I invite you to walk this journey with me and countless others battling SPS. Your donation to the SPSRF can fuel essential research, improve treatment protocols, and offer a lifeline to the SPS community. Let's make strides together. Join me in creating a world where SPS is a thing of the past.

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