From battling with the healthcare system to becoming an advocate for others.
I am Lucas J. Stone, a writer, author, and chronic illness and rare disease advocate. My mission is to increase awareness among medical professionals of rare diseases and to enhance patient experiences. I also want to connect individuals with chronic and rare diseases, helping them feel less isolated.
I totally get how tough it can be for folks like us. The challenge is not just getting a diagnosis and treatment, but also being believed and truly listened to. It’s not easy, that’s for sure.
As someone living with a rare neurological disease, I spent a very long time battling my way through these barriers. I was told my symptoms were just in my head—due to anxiety, depression, or a delayed reaction to grief. It took months of worsening symptoms and a second opinion before I began to be taken seriously.
I now write about my experiences on my blog, which is raw and unfiltered. I’m writing my first book for medical professionals to illustrate how their actions impact patients. This book is a valuable read for anyone on their diagnostic journey or who has recently finished it, as well as for their loved ones.
