Hannah Fights Against CRPS

My name is Hannah Slinger. I am 17 years old and live in Kent, Ohio. I was an everyday, average teenager until the summer going into my sophomore year of high school. I began having widespread pain, localizing in my lower back, and giant, unexplained bruises covering my whole body. I went through a series of tests, hospital exams, blood work, x-rays, etc. and discovered I have Von Willebrand Disease, a rare blood disorder causing irregularities in my platelets, and Fibromylagia, a chronic, widespread pain condition that causes deep muscle pain, flu-like aching in joints and extremities, fatigue, anxiety, and depression. I was put on a few different drugs to help with management of this new diagnosis as well as the stress fracture they found in my lower lumbar where most of my pain centralized at. That fall, I woke up a day in November and had lost all function of my left leg, and right arm. My skin was bright red, hot to the touch, and locked in place. A few weeks later of this terrifyingly excruciating pain that seemed to now control my body would result in my diagnosis of RSD, Reflexive Sympathetic Dystrophy.


Reflexive Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome(CRPS), is a chronic, incurable nerve disorder that causes patients unimaginable, burning pain in the affected limb/limbs that is constantly present being as severe as finger amputation without anesthetic. RSD has been rated the highest chronic pain disorder on the Mcgill Pain Scale, above non-terminal cancer and phantom limb pain. RSD symptoms also include severe muscles spasms in blood vessels and muscle tremors, hypersensitivity to touch, sound, temperature, and vibration, skin discolorations such as turning red, yellow, or purple, and texture changes to skin like shininess or bumps.

Since my original diagnosis of RSD I have been through multiple intensive therapies through Children's Hospital and Cleveland Clinic. RSD has spread throughout my left leg, into my spine, and right foot and is newly inside my chest and right shoulder. I have been on all of the available drugs for treatment of RSD and saw no relief. I have had lumbar sympathetic blocks on my left side twice, but the pain is still keeping me from living my daily life. All I want is to stop the burn, graduate high school and attend Eastern Michigan University majoring in Recreational Therapy to help children like me and with other disabilities find ways to express themselves through art and other mediums.


I am now faced with an opportunity to hopefully reach remission, through a new means of treatment located in Rhode Island called Calmar Therapy. Calmar is a non invasive, rather successful treatment that uses similar technology to a TENS unit which "scrabbles" pain signals in your brain and intercepts them before they get to your affected limbs. The only issue, is that my insurance does not cover this treatment. In order to get to Rhode Island we are asking for any help you can give, because in this case every penny counts.


I have been waiting for the day I can drop all of my crutches and ditch my walker and finally become free of this wretched pain. My family and I would be grateful for whatever donation you can possibly give.



Thank you and please help us fight the battle against RSD/CRPS!!!


here are links to learn more about my illnesses, treatment and more.
http://www.theprincessinthetower.org/RSD-CRPS.html
http://cprcenters.com/
https://www.nhlbi.nih.gov/health/health-topics/topics/vwd/