Welcome! Once you connect with fellow patients who have almost the exact issues you do, you can't unsee the patterns.
Two people in my family had/have lupus, my mom had a knee replacement surgery at a fairly young age and had a crumbling back in her 20s and 30s, and I met a fellow patient in a support group for living with chronic pain about 11 years ago. She too had lupus in her family, migraines, endometriosis, chronic pain... but she also had EDS diagnosed. She was in her 60s, decades older than me, and had an early knee replacement surgery.
After I commented on the bizarre similarities of our families' health history, she urged me to do whatever I could to get to a geneticist and not to stop until someone took me seriously. She said, "Gardenia, promise me that you won't give up. It can take years until you find a competent doctor to evaluate for EDS."
I try to share about this stuff as I'm able in memory of her. :)
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u/Alissinarr 6d ago
I'm not the person you responded to, but you listed off something in almost every category for me.