Chase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and Autism

The Spoonie Struggle

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3+ y ago 42:24

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Episode 7: Chase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and Autism

In this episode, we discuss Chase Joseph’s story. Chase was diagnosed with autism, Ehlers Danlos Syndrome, OCD, ADHD, dysautonomia (neutrally mediated hypertension), costochondritis, and gastroparesis. When he was 14, he had an exploratory laparotomy, and the surgeon nicked his bowels. The leg compressions in the hospital after that procedure were put on so tight that his muscles atrophied. He was later diagnosed with RSD from the whole ordeal. When he was 16, his tic disorder became so severe that he needed to be sedated at the hospital and was given a year to live. He has severe neck damage from the tics, and he sustained dozens of concussions from the tics. He underwent Deep Brain Stimulation for the tics, which he noted significantly helped. However, the surgery made the RSD symptoms resume, leading to numerous hospitalizations. He later needed a pacemaker for his dysautonomia. Due to the severity of his conditions, he received his diagnoses relatively quickly.

Chase only had a few misdiagnoses along the way, including fibromyalgia. Chase felt like doctors often felt that he was attention-seeking or drug-seeking, which was really upsetting. Chase usually has his parents assist him with advocating for himself and his care. Treatments include a pain pump and baclofen pump, DBS, and massage therapy. Chase copes using a sense of humor. Facebook groups have also been helpful for him.

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Hosted by: Jessica Temple

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49 episodios