Celia Chartres-Aris was a teenager when she was diagnosed with Loeys-Dietz syndrome, a terminal condition affecting connective tissue that requires her to eat via a tube
Loeys-Dietz syndrome is a terminal and degenerative disorder that affects connective tissue, which is needed to protect, support and give structure to all other tissues and organs in the body.
She continued: “I really struggled a lot when I was 15 and 16. I received a new diagnosis, which was much more complex than the one that I had before. “I got tested for that and when I hit 16 or 17, sh*t hit the fan. I lost the ability to eat, so I now eat through a tube. I can’t go to the bathroom on my own. I can’t do any of it on my own.After being told that she had a shorter life expectancy, she opened up about dealing with that reality.
She added: “I didn’t have Covid, it was totally unrelated to Covid, but because of it, I couldn’t have anyone with me. They said, ‘We’re giving it about 15% that you’re going to be going home. So start bracing for it and start preparing for it.’ “I’ve had my heart restarted and I’ve been shocked while I’ve been awake. I’ve had tubes shoved God knows where.
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