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Hayley's story

Hayley's Story

"It’s #reds4veds day!! i’m on year 5 of celebrating this day and the people who live every day with this genetic disorder, so let’s chat! My dad and i were diagnosed with vascular ehlers-danlos syndrome roughly 5 years ago and we’ve been fighting and learning about all that this disorder brings. 

If you’re new here, vEDS is a rare genetic disorder that affects connective tissue…putting arteries, hollow organs, skin, and the lungs at risk of aneurysms, rupture, and more. this year i wanted to share a little bit more about my experience…a couple of weeks ago i was hospitalized after having 8 migraines within a week. these migraines consisted of visual aura, brain stem aura, and headaches with nausea. after a couple of tests, the medical team at carle foundation hospital found a dissection and pseudoaneurysm in my carotid artery and a dissection in the V2 segment of the right vertebral artery. 

Luckily, at this time both conditions are stable and we are continuing to monitor both to determine what the next steps are. with spreading awareness, more and more medical professionals are learning about how to treat this condition and their patients. I'm so thankful for my entire medical team who has worked with me, my dad, and other family members who are working to keep us healthy and alive. also, a BIG thank you to my wonderful friends and family who stayed with me in the hospital and supported me throughout"
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