Personal stories are powerful tools for raising awareness, building connections, and offering hope to those navigating SPS. Many SPS patients and their loved ones have created websites and pages to share their experiences, struggles, and successes with this rare disease.
We wanted to highlight a few patient-driven platforms where you can learn more about individual journeys with SPS. While these resources are not affiliated with The Stiff Person Syndrome Research Foundation (The SPSRF), they provide an inspiring glimpse into the strength and resilience of the SPS community:
Patient Websites and Pages
My Life with Stiff Person Syndrome (Facebook Page) - Visit here
Stiff Person Syndrome (Facebook Page) - Visit here
Larry B. Mellick, MD – YouTube Video About a Patient’s Experience with SPS - Watch here
These platforms:
Offer real, personal perspectives on living with SPS
Educate others by raising awareness about SPS symptoms and daily challenges
Inspire connection through shared experiences
Why does this matter? Personal stories can help others feel less alone, educate friends and family, and increase broader awareness of SPS in ways clinical descriptions often can’t.
Have you shared your SPS story online? How has hearing someone else’s journey helped you or a loved one?
If you’ve come across other patient-driven websites or videos that you found meaningful, please share them in the comments below!
#SPSCommunity #ShareYourStory #PatientVoices #SPSAwareness #TheSPSRF
