This is one of Jackie’s favorite posters, since it expresses some of the many symptoms of Chiari, a condition in which the cerebellum descends through the opening in the skull. If you look closely, you can see her picture among the many other children with Chiari 1 Malformation. Jackie is a pain warrior, a fighter, and an advocate for others, pushing herself despite her daily struggles.
Hi, my name is Jacqueline Stager. I am sixteen years old, a high school senior, and I have Ehlers-Danlos Syndrome, along with about ten other diagnosed conditions that accompany EDS, including Postural Orthostatic Tachycardia Syndrome (POTS) and Chiari 1 Malformation. Recently, I started a Facebook group for teens with Ehlers-Danlos Syndrome: CT Teen Zebras.
I have a long history of musical and theatrical performance experience. When I was four, I was the littlest “Who” in Seussical the Musical and promptly fell in love with theatre. My elementary and middle school life was filled with almost daily classes at FineLine Theatre Arts in ballet, jazz, tap, contemporary dance, musical theatre, acting, a substantial amount of vocal coaching and just a pinch of acrobatics training. I thought my joint flexibility was a gift, however, as I got older, it stopped feeling like a blessing and just simply began to hurt. I was always riddled with terrible joint pain, headaches, stomach aches, and a whole range of strange symptoms. By age twelve, my daily pain had increased to such a peak that I had to give up dancing entirely. Shortly thereafter, I was diagnosed with Ehlers-Danlos Syndrome, a rare, genetic connective tissue disorder that affects every system of my body (you see, EDS causes collagen to be weak and collagen literally holds us together). Although, I had to give up dance, acting and performance (which I LOVED), I returned to singing with SingOut CT! a pre-professional chorus/glee group in Washington, CT.
In October of 2014, I had a catastrophic EDS accident. I sustained a cerebral spinal fluid leak due to a roller coaster ride. At that time, I was unaware that EDS could cause CSF leaks, or that I had Chiari 1 Malformation and cranio-cervical instability. The CSF leak went undiagnosed for NINE months. During that time, I became wheelchair-bound and was unable to attend school, read, write, carry on a conversation, or sit upright. My days and weeks were spent in doctor’s offices or in bed. The Chiari was found during this time, but the symptoms still didn’t completely explain why I was feeling so horrific. I finally saw a specialist in California, who listened to my symptoms and treated me for a CSF leak. Within a few days, I began to feel better, and within the year, significantly improved…..until my next leak, almost exactly one year later (July 2016). Confirmation of a leak and treatment wouldn’t come until February of 2017, with the treatment (a blood patch) performed in April of 2017. Most recently (July 2017), I sustained a mild whiplash accident, which bed-bound me for a month.
I cannot predict how EDS or Chiari will affect my life, exactly….I just know that I will be forever affected.
Due to the predictable unpredictability of EDS, I want to plan for my independence for college and my post-college life. A service dog will enable me to achieve that independence. My ECAD service dog will be able to pick things up off the floor for me, retrieve items, open doors, push elevator buttons, accompany me to class, alert someone for help, stabilize me if I feel faint, and be a wonderful companion.
Thank you for your generous support to help ECAD educate a service dog for Jackie.
Donations are 100% tax-deductible as allowable by law. If your employer has a Matching Gift program,
please complete the form and mail it to ECAD, P.O. Box 831, Torrington, CT 06790.