Dysautonomia Patient Story 12/2019

Hi everyone! Welcome to the first TDP Patient Story blog. For our first case study, we will be summarizing the journey of a male patient living in Denmark, age 52. He is battling multiple forms of dysautonomia including: autonomic dysfunction, orthostatic hypotension, and hereditary neuropathy with liability to pressure palsies also known as HNPP. While he is fortunate enough to function at work, he needed to arrange limited hours and unique accommodations for his condition. There are some fantastic employers out there that will work with patients on their schedules and limitations. He struggles daily with heat intolerance, circulation issues, fatigue, difficulty standing for extended periods of time, nausea, fainting, brain fog, etc.

This patient more than doubled the journey to a diagnosis by searching for 13 long years. After he was finally diagnosed, he was successful in finding ways to increase his functions in daily life. With his ADA accessible vehicle and service dog, he is more independent in daily life. He takes Florinef and stated, “Florinef treatment worked magically from day 1. Wasn´t aware or gotten used to leg pain that I had for about 15 years until it was suddenly gone.” He has increased his intake of both salt and fluids, uses compression garments, counter maneuvers, and follows healthy sleeping habits. These changes have improved his functionality on a daily basis.

He has endured the combined symptoms of dysautonomia and HNPP. Through this journey, he has been fortunate enough to find healthcare providers that are knowledgeable about his symptoms and validate what he is going through. This patient has struggled for a long time. He states that education on dysautonomia is helping to improve his care.

The mission of The Dysautonomia Project is to educate healthcare professionals, patients and communities about dysautonomia. Stay tuned each month for a new case study!

-The Dysautonomia Project Team

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