Jed’s son has a genetic disorder called Ehlers-Danlos Syndrome (EDS) and a type of dysautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). His autonomic nervous system does not regulate his sleep, digestion, body temperature, and heart rate automatically. He has heart problems and needs his spine to be fused. EDS affects so many organs and body systems that a team of specialists is required to manage and treat his symptoms as they develop. There is currently no known cure for EDS: treatment is supportive and includes close monitoring of the digestive, excretory and particularly the cardiovascular systems.
EDS is a complex, lifelong progressively debilitating syndrome that affects several systems of the body and causes gene mutations and defective collagen proteins. Because EDS is not immediately apparent, patients who suffer from the illness are often told they are lazy and faking symptoms or are misdiagnosed with psychological disorders, somatic disorders, Fibromyalgia, and Chronic Fatigue Syndrome. Combined, however, these misdiagnoses can tell a story that finally leads to a correct diagnosis.
Jed, a former Engineer, is now his son’s full-time caregiver, medical administrator, and medical researcher. Jed would collect, organize, and request transfers of his son’s records. He remembers this process as a nightmare. “There are so many records, tests, histories, images, and labs that all specialists depend on to make decisions. I was rarely able to share all the necessary records with the new specialists or PCP in time for the next appointment.”
Jed used to physically drag as many medical records as he could to each appointment and then try to remember diagnoses, treatments, and rationale on the spot. He spent a lot of time filing, organizing, and filling out HIPAA compliance forms and record transfer requests. He then had to follow up to make sure the requests were received and often refax them. Many times he had to navigate phone trees and provide proof of identity before he could even ask whether his faxes had been received. Jed found that he often had to neglect his son because he was so busy on the phone, scanning, faxing, filing, following up, and asking his son for signatures. At one point Jed’s son asked for a signature stamp because he had to sign so many documents.
Jed slowly became unable to keep up with the HIPAA compliance paperwork and the number of record transfer requests. It was often easier to order an updated image or lab test than to wait for records needed to recommend treatment that might relieve his son’s new symptoms. Jed decided he wanted better quality of care, fewer appointments, and to have more time to look after both his son and himself. After researching his options, Jed signed up for PicnicHealth so he could stop worrying about paperwork and focus more on his son’s health. He noted that PicnicHealth was the only service he found that manages most of the demands described earlier. “Other services still require the patient to retrieve records and do the endless data entry.”
Jed notes that letting PicnicHealth collect and organize his son’s medical records has reduced his family’s stress and given them hope. In addition, his son needs fewer medical tests, which has reduced his lifetime exposure to x-rays, resulted in less poking and prodding, and has saved his family money on out-of-pocket expenses. Jed now has more time to spend with his son because he no longer has to gather, enter, organize, and share records with physicians. He states, “Now I can do most of the requests online with very little repetition. I can easily find and review my son’s records so I can ask better questions during the appointments and provide better answers. PicnicHealth reduces the number of record transfers a provider needs to send out. I got my insurance company intrigued by PicnicHealth when I told them they save money by reducing tests and office visits while providing improved quality of care for my son.”