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  • The SPSRF Staff

Voices of SPS: Rachel Hallstrom

Updated: Jun 28


My name is Rachel Hallstrom, and I'm a college student in Anchorage, Alaska. At eighteen, I was a picture of health, training for a triathlon and thriving on a Paleo diet. But everything changed when I began to experience alarming symptoms. It took seven months, countless misdiagnoses, and a trip to the Mayo Clinic before I finally learned I had Stiff Person Syndrome (SPS).


Before my diagnosis, my life was a whirlwind of medical uncertainty, anxiety, and debilitating symptoms. Being surrounded by people or hearing loud noises would set off an exaggerated startle response, known as hyperekplexia. I had to deal with relentless back stiffness, difficulty breathing, and chronic fatigue. I tried numerous treatments that were hard on my system and left me reeling from their side effects.


The turning point came when I started an experimental treatment trial with a drug called Eculizumab (Solaris). This medication brought about a transformation I hadn't dared to hope for: it put my SPS into clinical remission.


That was over a year ago, and today, I am the closest to my pre-SPS self than I've been in years.


This journey has changed me profoundly. Having SPS taught me to live in the moment, to prioritize my health, and to adapt to my situation. I've learned to find joy in different ways, channeling my creativity into problem-solving and art.


I discovered The Stiff Person Syndrome Research Foundation (The SPSRF) during the hardest part of my journey, and they've been a beacon of hope. They offer valuable resources to people like me and our healthcare providers, ensuring we're not alone in our fight against this rare disease.


But there are many more people out there who still need help. That's why I'm asking for your support. Your donation to the SPSRF will provide resources, research, and hope for others diagnosed with SPS. Together, we can help them find their turning point, just as I found mine.


Thank you for joining this crucial fight.



 

Comment from The Stiff Person Syndrome Research Foundation (SPSRF):

We deeply appreciate Rachel sharing her personal journey with Stiff Person Syndrome (SPS) and the transformative impact of her experimental treatment. It's essential to note that while Eculizumab (Soliris) has shown positive results for Rachel, it is an experimental treatment and may not have the same effect on all SPS patients. Additionally, Soliris carries a risk of serious and sometimes life-threatening complications, especially for those who are immunocompromised. We urge individuals to consult with their healthcare providers before considering any new treatments. 


At SPSRF, we are committed to providing accurate and balanced information, ensuring that our community remains informed and hopeful. Every patient's journey is unique, and we continue to support research and resources to find the best solutions for all affected by SPS.

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