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Vascular EDS is relentless. Sometimes it’s subtle, but mostly it isn’t.
I am a surviving spouse – the love of my life had this relentless disease. During that time my dear husband’s body was attacked by an invisible enemy.
There were major events, a spontaneously ruptured spleen, gastric aneurysm (where he was an early recipient of an artery embolism), a radial aneurysm, a ruptured colon requiring a colostomy, retroperitoneal bleed, and several others that were not as life threatening- ALL of which he survived and fully recovered.
Wayne was almost 59 when he lost the battle for his life in 2017. He was definitively diagnosed in 1995 at the age of 37. We were married for 28 1/2 years. Without doubt, he was the bravest person I have ever known. I am so thankful for the years we had together; we had great years between crisis events. He worked for a Christian radio ministry and served as a chaplain with Asheville NC Police and Fire departments up until the day he passed away.
Wayne’s dad died of vEDS at the age of 43 during surgery. At that time is was a rare and unknown disease with no other known classification. Wayne was blessed with great doctors, great friends and family, and a strong family of faith to support us during all the major and minor crises. As Wayne often stated, he was blessed by being born when he was, and with the “miracle of medicine.”
If there are indications something is wrong, search for answers. Find supportive physicians, ask the tough questions, learn new treatments, question any surgeries, change doctors if you have to. But don’t give up! God Bless.Tags: awareness, Diagnosis Journey, family, in memorium, vascular, vEDS
Categorized in: Stories