- CASE FILE
I was born with a rare genetic connective tissue disorder called ehlers-danlos syndrome. New cervical and spinal instability.
ABOUT THIS CASE FILE
I have also been diagnosed craniocervical instability , tethered spinal cord, with postural orthostatic tachycardia and gastroparesis. At age 8 I was diagnosed with a rare connective tissue disorder that allow your bodies joints to dislocate sublux and move beyond their normal range of motion. At age 20 I got the craniocervical instability diagnosis. When I move my had left , right , up or down my vertebrae can dislocate. If a full dislocation was to happen in my spine I would die. I spend my days In a hard cervical collar in bed. The tethered spinal cord makes it so I'm not able to bend twist or turn my upper body , because by doing those motions I'm pulling and stretching on my spinal cord. A spinal cord is supposed to be free-flowing but mine has recently gotten attached to the side of the spinal column and needs to be detethered by a specialist neurosurgeon. I have a suspected slow cerebral spinal fluid leak as well due to the cord stretching. Their are only four neurosurgeons in the U.S that specialize in connective tissue disorders and that will perform surgery on me. I am in intense pain everyday as well as so many other symptoms that I'm not listing. I have two other conditions called postural orthostatic tachycardia and gastroparesis. POTS is when your body can not regulate your heart rate witch in return causes fainting. I sometimes faint up to 3 times a day but that's on my really bad days. Gastroparesis is a form of paralyzed stomach. People with ehlers-danlos syndrome commonly have gastroparesis as well. Gastroparesis causes vomiting , abdominal pain, cramping, bloating feeling full fast, not being able to maintain weight, dehydration , malnutrition and weight loss. I have lost 30lbs in a month due to vomiting because of gastroparesis. Up until last year my health has been ok. I had to quit my job, stop school, stop driving , and my life just turned upside down.