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My husband has Ehlers-Danlos syndrome. He was the typical case that wasn’t caught until he was older.
When he was about 20, he swatted at a wasp and his arm dislocated. The surgeon that did the surgery knew there was something more going on because of the severity of the tips and tears. It was him who advised us to talk to a doctor he knew personally, that had EDS. That was where this journey started.
During his life Tom has had several hernia surgeries, eye conditions, and skin conditions, that finally started making sense. As the years went by, struggling find the help he needed, his health only continued to get worse. We found out it was also affecting his heart, lungs, colon, and more. He has severe sleep apneoa, his entire stomach has been meshed twice, he has had congestive heart failure, and has a defibrillator in his chest. We were told that typically a person with EDS would only have one kind, but he has experienced a lot of dislocations, including his shoulders, knees, hip, wrists, and ankles.
We haven’t had much of a support system, and are still learning new things about him. When he first got really sick he had an awesome job, great insurance, but the doctor that first diagnosed him wouldn’t fill out his paperwork for work, because he thought if he could work, so could Tom. He wasn’t taking into consideration that Tom was dealing with much more than he was.
It got to the point of Tom’s own mother telling their boss, that she didn’t believe him and thought he was faking it, causing him to get fired and losing insurance and all. We struggled to keep him alive and managed to survive for 5 years waiting for disability to come through, with the worst kind of insurance. Sadly it makes a big difference. He has experienced so many scary, close calls it would take a book to talk about it all. He has been sent home from the ER throwing up blood because they thought he was looking for pain medications, only to have to be rushed to another hospital after throwing up what looked like gallons of blood – he had a torn throat from his EDS. This whole thing has been a total nightmare for our family. We have lost most of our family due to it. He has almost passed away several times.
We have gotten him a dog that is his emotional support dog right now, but we would love to get fully trained for things like what to do if his defibrillator goes off, or how to call for help if he dislocates and falls. But right now her emotional support has been a very huge blessing, especially after this last thing that happened when we almost lost him. The hospital gave him four doses of blood thinner after a major surgery and we almost lost him. The trauma his body went through was extremely hard to bear, but his dog Cookie really helped a lot during that time. I would love to tell our whole story, it’s a lot to try to put into place, but people need to hear his story.Tags: Cardiac-valvular EDS, Coping, cVEDS, Diagnosis Journey, Men, service dogs
Categorized in: Stories