About Me:
As someone who's been diagnosed with Chiari Malformation 1.5 and recently has gone through the decompression surgery, I've built this website (Chiari Malformation Awareness) to be dedicated to educating the public about Chiari Malformation, empowering individuals with the condition, and advocating for improved treatment and support. Through my blog, I aim to raise awareness, foster a community of understanding and compassion, and provide valuable resources for those affected by Chiari Malformation. I strive to share personal stories, expert insights, and the latest research to help patients, caregivers, and healthcare professionals better understand this complex condition. By spreading knowledge and offering support, I hope to improve the quality of life for individuals with Chiari Malformation and inspire positive change in medical practices, treatments, and public perception. My mission is to ensure that no one facing this condition feels alone or uninformed as they navigate their journey.
My Story:
Hi I'm Sophia! I'm currently a freshman in college but was diagnosed with Chiari Malformation Type 1.5 August 2023, the summer before my senior year of high school. This was very scary and blew straight over mine and my parents heads, we had no idea what Chiari Malformation was and how it was going to affect all of our lives over the next year. When I saw my first neurologist back in September of 2023, they explained my condition and said that I would not need surgery with such a mild case. Fast forward to September 2024, my neurologist said that my case had worsened and that I was dealing with spinal cysts (syrinx) that were causing my numbness in my fingers and toes on the soccer field and the constant imbalance and falling over. Besides those symptoms, I also dealt with headaches while laughing, coughing, yelling or straining my neck in any way, along with anxiety and dizziness. I wasn't very hopeful at the time and was horrified of surgery but when that neurologist recommended I get a second opinion, I knew I had to start doing some research. My parents and I had no idea where to start but through TikTok and Instagram, I saw that there were other people struggling with the same condition I was in. We then saw my current neurologist and I had my decompression surgery about a month ago. I'm recovering well so far but wanted to share my story as a student, athlete, musician, daughter, granddaughter and sister but I'm also a Chari Warrior. #chiaristrong