# @embracingecho on Instagram

- **Type:** Image
- **Original URL:** https://www.instagram.com/p/DVo3858EscB
- **Gondola URL:** https://gondola.cc/posts/61852863-embracingecho-instagram
- **Thumbnail:** https://img.gondola.cc/tr:w-,h-,fo-auto/postThumbnails/f815d4a72f.jpg
- **Posted:** 2026-03-08T21:32:30.000+00:00
- **Account Owner:** Jaime Simpson (@embracingecho) — https://gondola.cc/embracingecho

## Caption

Today we “Walked For Victory” with the themarfanfoundation vedsmovement and loeysdietz 💜❤️🩵 As most of you know, I have Vascular Ehlers Danlos Syndrome — gene COLA31 and after testing our entire family, we found the same #VEDS variant in my mom and sister and then a de novo variant (spontaneous mutation) of Loeys-Dietz Syndrome — gene TGFB2 in Halstie that NO ONE else in our family has. She has a 50% chance of passing it down if she chooses to have children. I didn’t know much about my genetics when I had my kids. I only truly understood the severity at genetic counseling appointments when I was pregnant with Payson. It definitely explains the complicated birth and #complexdiagnoses my entire life. My grandfather died of vascular complications likely related to VEDS. LDS truly explains Halstie from birth until now and each little complication we’ve encountered is so predictable for Loeys-Dietz. Although dangerous, we can be prepared for what comes our way. Today was about community and spreading awareness. I talk about VEDS all of the time but March is #LoeysDietzawareness month.

Loeys-Dietz syndrome is characterized by vascular findings (cerebral, thoracic, and abdominal arterial aneurysms and/or dissections), skeletal manifestations (pectus excavatum or pectus carinatum, scoliosis, joint laxity, arachnodactyly, talipes equinovarus, and cervical spine malformation and/or instability), craniofacial features (hypertelorism, strabismus, bifid uvula / cleft palate, and craniosynostosis that can involve any sutures), and cutaneous findings (velvety and translucent skin, easy bruising, and dystrophic scars). Individuals with LDS are predisposed to widespread and aggressive arterial aneurysms and pregnancy-related complications including uterine rupture and death. Individuals with LDS can show a strong predisposition for allergic/inflammatory disease including asthma, eczema, and reactions to food or environmental allergens. There is also an increased incidence of gastrointestinal inflammation including eosinophilic esophagitis and gastritis or inflammatory bowel disease. Halstie’s type is more mild in the vascular areas than the other types #loeysdietz

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## Tags

loeysdietzawareness, loeysdietz, complexdiagnoses, veds

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