Although Diane had hEDS all her life, she was not diagnosed until her late 40’s. Prior to that diagnosis, she was a fit athlete who practiced and competed in Taekwondo regularly. She thought all her past surgeries were just the usual consequences of her practice and workout routines, unaware that EDS would factor greatly as the primary cause of those 38 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 EDS, hyper-mobile, or hEDS. The news was hard, but somewhat expected, and over the years we have learned to accept and adapt. Some of those adaptations included finding the unique type of crutches that she needed to use (as ordinary crutches destroyed her hands), the multiple hand and finger splints that she wore daily, and the hip braces she had to wear often.
While we accepted the reality of her diagnosis, aging brought with it additional problems. She started rapidly losing weight, experiencing gut pain, and having other digestive and abdominal issues. Some of these 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 our 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, but her body was reacting to those foods and fluids that she was consuming. So, I began breaking down her intake and looking at all sorts of diets and explanations. Implementing diet changes and the type of water she drank made a big difference. While this was not a cure (as there is none for hEDS), it was definitely the next best thing. Though this has been a difficult journey, today we are managing well.
In summary, since that nearly tragic weekend, we have made a plan, and we continue to refine and modify this plan. Over time, we’ve been able to gradually improve her health and digestive functioning. Now, with all this experience at hand, I am creating this webspace in order to help as many people out there who are going through the same issues. Remember, the chosen mascot for EDS is a zebra for a reason, each person with EDS and HSD is unique, and no two are alike. Therefore, use the summary of our experiences, knowledge, and diet plans to create your own starting plan. Then, start your own evolution, where you modify and adjust according to your specific needs, wants, results, etc. Please note that what we are describing may or may not make medical sense, and we are not medical nor nutrition experts, but this has worked for us. We hope this helps you, too!