The story of Reanna
My name is Reanna and I have Chiari Malformation, Hypermobile Ehlers-Danlos Syndrome, Dysautonomia and a few other comorbities. It has been a challenge finding doctors and medical care providers that are knowledgable about my conditions. One of the reasons that I spread awareness, is that we need more providers and specialists that can adaquatly treat us for these conditions. Because the there is not a high level of selection, many of us travel long distances for treatment and surgery, which is when we need to be close to home the most. A few weeks after this video, I had surgery for my Chiari and unfortunatly I have become much worse than I was before. That is due to my EDS and I am putting in a lot of work to see a top specialist on the East Coast. One of my children has Chiari, as well. That also as has been a huge motivator for me to be involved in awareness, advocacy and fundraising. Since getting sick, I had to give up my job as a day care owner. However, through organizations like the Chiari & Syringomyelia Foundation, Dysautonomia Support Network, Dysautonomia Information Network and The online publication, The Mighty, I have been able to be invloved and give back to our community. It has renewed a sense of purpose that was lost when I shut the doors to my daycare. I love the sense of unity within these organizations. I may have to fight this battle, but I DO NOT have to fight alone.