Never Loose Yourself

Although my wife Diane has had an autoimmune condition known as hEDS (aka HSD) all her life, she was not diagnosed until her early 50’s. Prior to that diagnosis, she was a fit athlete who practiced and competed in Taekwondo regularly. She thought all her past 30+ surgeries were just the usual consequences of her practice and workout routines, unaware that HSD would factor greatly as the primary cause of most of her surgeries and joint replacements. When her hand surgery and hip replacement surgeries were not successful and required multiple operations to correct, her doctors started to dig deeper. After some testing and lab work, her geneticist diagnosed her with hyper-mobility EDS (hEDS), also known as Hyper-mobility Spectrum Disorder (HSD). The news was hard, but somewhat expected, and over the years we have learned to accept and adapt. Some of those adaptations included finding a special type of South African made crutches that she needed to use (as ordinary crutches destroyed her hands), the multiple hand and finger splints that she wears daily, and the metal hip braces she had to wear, and often slept with, for months at a time.

While we accepted the reality of her diagnosis, aging brought with it another major problem. She started rapidly losing weight, experiencing gut pain, and other digestive and abdominal issues. Some of those abdominal and digestive issues that were present during childhood were now more severe. Despite following up with specialists and undergoing every test imaginable, the situation deteriorated quickly until she crashed. While physicians and specialists explored the causes of her digestive issues, they were largely unsuccessful in helping with a solution. Meanwhile, I searched the internet, across the USA and Europe, looking for anything that could help. During my research, one thing that popped up a few times, and sounded like a last resort, was the phrase “management by diet”. In retrospect this made sense – she needed foods and fluids to survive, but her body was sensitive and reacting to the foods and fluids that she was consuming. I began breaking down her intake and looking at all sorts of diets and explanations. We started implementing new dietary and hydration changes, and that made a big difference. While this was not a cure (as there is none for hEDS/HSD), it was definitely the next best thing.

Please use this link to review my webspace "Food Allergy" - with years of experience managing food allergy and sensitivity, as well as hydration, for EDS patients and others with similar digestive tract issues.

The COVID-19 pandemic brought new challenges for Diane, who has HSD. Despite staying fully vaccinated, masking in public, and managing mild side effects from the vaccines, she contracted COVID-19 in December 2022. Initially, her symptoms were mild, and she recovered quickly. However, days after feeling better, she experienced a severe pain episode while attempting to stand, leaving her breathless and immobilized for over 20 minutes. Following this, Diane’s heart rate became erratic, spiking whenever she stood and leaving her doubled over in pain. Fatigue, nausea, and sharp, radiating chest and back pain soon followed, drastically reducing her activity levels and contributing to weight loss. Sitting with her legs elevated was the only way to ease her symptoms, but the persistent pain and anxiety were overwhelming. Recently retired from her role as an HR Coordinator for a school district—where she also triaged COVID-19 staff—Diane used her network to connect with others facing similar post-COVID issues. Based on their shared experiences, she became convinced her symptoms were consistent with POTS (Postural Orthostatic Tachycardia Syndrome). Later on, Diane was finally diagnosed with Long-COVID.

While POTS does not cause brain injury, the brain tissue damage, the ongoing reduction of blood circulation in the brain or decrease in overall volume can lead to symptoms that are similar to those with cognitive functioning brain injury.

Though this has been a difficult journey, today we are managing better, and Diane did not slow down much, as an invaluable worker, as a fantastic mother, or as an amazing partner. What an inspiration!