Jessy has been living with a disabling mystery illness that has turned his life upside down. He experiences extreme fatigue, brain fog, tremors and intense pain. His body has become so unreliable that he requires a wheelchair to navigate the world. And yet, his doctors have no idea what is wrong or how to help him.
In this episode of the Major Pain podcast, Jessy discusses his mystery illness and the profound impact it has had on his life. His experiences with the medical establishment have been almost as challenging as the illness itself, with many doctors brushing off his complaints or refusing to run tests. Jessy is currently being examined for young onset Parkinson’s disease (YOPD) but has yet to make headway in confirming or disproving this diagnosis. His medical crisis has extended to all corners of his life, making it difficult to bring his full self to work or parenting. He is trying to harness the anger at how doctors have treated him as fuel to get him out of bed every day, and keep fighting until he finds answers.
We hope that the Major Pain audience may have some ideas for Jessy to explore in regards to his mystery illness. Please email us at email@example.com if you have anything to suggest.
A great resource for learning about mast cell activation syndrome (MCAS) was mentioned in the introduction to this episode, and can be found here: https://www.ifm.org/news-insights/root-causes-treatment-of-mast-cell-disease/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast
This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/