Welcome!

Hey all! My name is Shira, I'm thirteen, and I live in Newport Beach, California. Yes that's right, Sunny SoCal. Before you ask I'm not tan (i'm actually white as a vampire), no blue eyes here, and beach volleyball + me = bad things... ;) I started this blog as a way to reach out to others in similar situations as myself, also to let people know what's going on with me since I'm having an upcoming surgery.

I am the original Sic(k) chick. When people say that they’re one in a million, they mean that they’re unique. I actually am one in a million because of my rare diseases. I have Ehlers-Danlos Syndrome Type 3 (hypermobility); it is a genetic collagen tissue disorder in which my collagen is too stretchy and that causes problems. All my joints randomly dislocate, but on the plus side I am extremely flexible and can do lots of cool ‘party tricks’! I have Dysautonomia, which literally translates to the failure of the autonomic nervous system. Basically everything your body unconsciously controls for you, mine doesn’t. My body doesn’t control it’s temperature, heart rate, blood pressure, internal organs, and my five senses. My friends say I’m part werewolf because I can hear and smell things other people can’t (also according to some people I have the temper to match too…). Part of the Dysautonomia is Postural Orthostatic Tachycardia Syndrome, or POTS, when I change posture my blood pressure drops so my heart rate steps it up to compensate, then well, I faint. Adding to the ever growing list of rare diseases I have a neurovascular pain syndrome called Reflex Symapthetic Dystrophy and a rare bleeding disorder that I can’t spell so I’m not going to try!

Just because I’m ‘disabled’ doesn’t mean I can’t do things! I try to do things normally, whatever that means. I go to school, take piano lessons, and enjoy being a spastic teenager. As I always say, disabled really means differently abled.

I recently found out that I have Tethered Cord Syndrome, which is common with EDS. My spinal cord is tethered at the bottom of my back and they will have to go in and remove it surgically. My symptoms of TC include; weakness of my legs, numbness/tingling in my legs, and back pain. I’m set to have surgery on the 18^th of September in Maryland preformed by Dr. Henderson. If you would like to know more about any of my illnesses or my upcoming surgery please go to the links section.

All my love ~ The Sic(k) Chick