The personal side of VEDS
My Life with VEDS – The Abridged Version
When I received my diagnosis of Vascular Ehlers-Danlos Syndrome (VEDS) in 2011, we were dealing with the after-effects of a traumatic c-section, bowel issues, and aneurysms, so we had little time to process the long-term effects of the disease. In simple terms, I’m at risk for intestinal, organ, or arterial ruptures. Any time. Anywhere. Without warning. Extreme caution and hyper-awareness of any unusual symptoms are a necessity.
Because it’s vital for emergency personnel and surgeons to know my diagnosis before treatment, I wear a medical ID bracelet and try to (remember to) carry my four-page health history with me when I travel. VEDS is considered an invisible illness, so I don’t necessarily “look sick” – except the scars and scans tell the whole story.
Thankfully, I do not experience daily chronic pain, but odd and concerning symptoms can – and do – pop up. We have to decide if these warrant an ER visit, scans ordered from my vascular specialist, or if I just need to take it easy for a few days. Traveling brings special concerns, such as, “Is there a good hospital nearby?” or “Will new symptoms interrupt our vacation?” But because life is short (oh, how well do I know this!), I don’t let those fears keep me from making memories.
While each person with VEDS may have different presentations of the disease, here is an overview of how it's impacted me personally:
Common facial features like large eyes, thin nose, and thin, fragile skin
Easy bruising and visible veins on my chest and arms throughout my life
Age 20: Spontaneous ruptured colon that nearly took my life; multiple surgeries and removal of about 2 feet of intestines; temporary colostomy and jejunostomy bags; exclusive TPN (Total Parenteral Nutrition), also known as IV feeding; six months to recover
Age 29-33: Difficulty conceiving because of scar tissue
Age 33: Emergency c-section of my son
My labor was initially induced due to high blood pressure, but they had to rush me into a c-section because his heart rate dropped. We were praying against a c-section because of all of my scar tissue, but a c-section most likely saved our son’s life and mine. God knew.
Ruptured uterus
Needed 25+ units of blood due to bleeding out (meaning they had to replenish my body’s entire blood supply about three times over within a 24-hour period)
Emergency bowel resection due to necrotic (dying) tissue – removal of 4-5 feet of my small and large intestines
In the days following our son’s birth and the new discovery of aneurysms, geneticists at the hospital connected the dots, suspecting a connective tissue disorder. Bloodwork confirmed Vascular Ehlers-Danlos Syndrome at the age of 33.
Stayed in the hospital five weeks to stabilize enough to return home, under the care of my husband, home-health nurses, friends and family.
From November 2011- August 2012, I had numerous ER visits and hospitalizations; I was under the care of home-health nurses and continued on IV feeding for 9 months until my intestines fully healed
Following my son’s birth and the loss of so much blood, my body was fighting to stabilize. We had noticed a lump on my neck a couple of weeks before birth – it was still there while I was in the ICU. Scans revealed five aneurysms in my body, including a large one on my right carotid artery (my neck), which carries blood to the brain.
Within weeks of our son’s birth, the carotid artery aneurysm had grown at an alarming rate – it was a physically visible golf-ball-sized lump on my neck – and it was at risk of “imminent rupture” according to my vascular surgeon. Just three month’s after Reed’s delivery, I was still very sick from my bowel problems, but had to undergo emergency surgery to stop the aneurysm’s growth and potential rupture. Specialists at Johns Hopkins Hospital fed 46 platinum coils and two stents up my femoral artery to keep blood flow to my brain and clot off the aneurysm. The surgery was successful. The CT scans from before and after are amazing!
I had minor strokes (TIAs) following this surgery, but it was caught very quickly and addressed by Neuro-ICU staff. They were able to save the use of my left side, which was suffering effects of the stroke.
From 2013-present, I’ve had several ER visits to investigate sudden pain or new symptoms to rule out any major vascular issues.
In 2017, I had two surgeries on aneurysms in my right wrist and internal mammary artery.
In total, I’ve had about 16 surgeries to address bowel issues, aneurysms, and other EDS-related issues.
In 2024, I had an ER visit and hospitalization out of state for a partial bowel obstruction. No surgery was required, but my body's violent reaction to an attempted NG tube placement resulted in broken blood vessels and extensive bruising on my chest. This caused pseudoaneurysms that had to be treated with a procedure by interventional radiology to inject clotting agents.
I get scans every year to monitor existing aneurysms and check for new ones. My vascular surgeon, who is a national expert on VEDS, then determines if the aneurysms need addressed or monitored more frequently. I’m probably glowing from all of the radiation I’ve had!
It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed. Deut. 31:8
