Loeys-Dietz Syndrome

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Loeys-Dietz Syndrome
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Feeling like a bit of a burden today

My sister is my best friend and the only human in the world who understands me and accepts me completely. We had plans to move out of our parents' house together (after having to move back to help take care of our dad). I've been saving things for our apartment for months.

She recently got into a serious relationship and has been spending most nights with her boyfriend at his house.

It's just occurred to me that she doesn't need me anymore. I can't bring in much money just on disability. She has a good job and can move out without me. She'll ask me to come, but I don't want to be the third wheel when she decides to move in with this guy.

She wants me around, and I know that. But at the same time, I don't want to be the disabled sister that she feels responsible for. I don't want to hold her back. I don't want her to miss out on the opportunities that she has just because she feels bad leaving me behind.

I guess I'm having a difficult time knowing that I still need her so much and she doesn't need me anymore.

She's the one I would usually talk to about these things. It feels good to get it out there. #LoeysDietzSyndrome #disablity #Family

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I’m finally getting a gene test!

I finally went to genealogy the other day. The doctors were confused as I don’t fit into any criteria. I was one point off for meeting Heds and one point off for Marfan Syndrome. But I show multiple other symptoms that aren’t technically part of the criteria. Puzzled but believing me that something was up, they decided to do a 28 gene panel test. Now I just need to wait for my insurance. I finally can get answers!!! #EhlersDanlosSyndrome #MarfanSyndrome #LoeysDietzSyndrome #RareDisease #ChronicIllness


What exactly is it bc my dr.s think I have it but my insurance wont pay for the test that tells me if I do or not and I am at higher for aneurysms#