r/LoeysDietz

▲ 9 r/LoeysDietz+2 crossposts

Suspected aortic rupture in the family - need help figuring out US healthcare

Hi, one of my overseas family members suddenly passed away from some kind of internal bleeding. Unfortunately I can't learn the specific cause of death due to estrangement & language barrier.

My direct family members and I have lots of the outward signs like being very thin, long fingers/toes, flat feet, retrognathia, food allergies, skin issues, myopia, etc etc. I don't know if it's specifically LDS or maybe Marfans /another connective tissue disease, or just all flukes and I'm worrying for nothing.

mainly I'm really scared of dying suddenly from a ruptured aorta or artery or something.

I managed to secure stable income and my health insurance begins next month. I am very unfamiliar with the US health system and trying to figure things out,

I don't have a PCP yet, If I want to screen for my risk of arterial issues should I try to get a cardiologist, or gene testing first? Ideally I want to get my aorta and major arteries scanned to see if they are enlarging. Do I ask the doctor for a referral directly or do they need the details on my family member? And roughly how much USD$ do I need to save up for a scan if the insurance doesn't cover it?

Also should I do anything in the meantime to make sure I get medical attention if I go down with an aorta rupture? I have stopped most of my strenuous activities like bouldering and gym. I want to make sure at least that I can call 911 before I black out or someone's there to call for me.

I'm sorry for all the questions but it's been so difficult to research this and I would really appreciate some help thank you everyone 💜

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u/vexingly22 — 3 days ago

LDS and an IUD

Does anyone in this group have any experience with an IUD? I want to switch off my birth control to something non-hormonal, but I have a friend with a different connective tissue disorder (undiagnosed, but all the obvious symptoms) who has had hers fall out twice! She was also using a diva cup with it so that may have contributed, but I would be curious if anyone has experience with both. Any information would be greatly appreciated!

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u/Icy_Worker4402 — 9 days ago