I am a dystonia patient. And this campaign aims to raise funds for my Deep Brain Stimulation surgery. I humbly ask for financial assistance.
One of the popular treatments of XDP is DBS or Deep Brain Stimulation.
Deep brain stimulation (DBS) is a surgical procedure used to treat a variety of neurological disorders, including movement dystonias such as dystonia. A battery-powered stimulator —essentially a brain pacemaker—is surgically implanted and delivers electrical stimulation to the areas of the brain associated with dystonia. The stimulator is implanted into the chest or abdomen, and extension wires connect the stimulator to leads deep in the brain. The stimulation is adjusted by remote control to achieve the best settings for each individual patient. The procedure is completed in several phases: pre-surgical assessment and work-up, implanting the leads, implanting the stimulator, activating the stimulator, and programming the stimulation settings. It reduces the symptoms of XDP to 60% max.... and yes it's not cheap. Close to 1.8 million.