Introduction

Hello.  My name is Lavonia.  I'm known on the internet for making art (despite being a bit of a recluse), so I'm used to putting a lot of personal information online.  I also feel the need to share my personal story of ependymoma with others because I feel collaborative information can be so helpful for people with rare diseases.  This blog is created with the purpose solely of sharing information about my intramedullary ependymoma.  300 out of 7 billion people are diagnosed with ependymoma each year, a rare form of brain/spinal tumor.

I live in Phoenix, which ranks high with the medical neurological care of the Barrow's Institute.  I know even there I'm pretty alone in terms of others with the same condition.  It can be frustrating, even with great doctors in finding answers and trying make the best of it.