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Jeremias was diagnosed with vEDS after they got the diagnosis for Miles, one of his three children who is now 9 years old. One of his other kids, Henry, was also diagnosed at that time. If his wife, Rachel, had not pushed for a diagnosis, they likely would not have the answers they have today.
Jeremias is 33 now and has been fortunate to have few life-threatening complications so far. He has had a lot of lung issues, and a partial collapsed lung during a bout of bronchitis earlier this year. They’ve gotten a plan set up at school for the teachers to follow in case of emergencies for Henry and Miles and have good docs in Texas that follow them!
If you haven’t connected with someone else with vEDS and you have been diagnosed, reach out! translucentone.blog/contact-me
Also, if you have genetically confirmed vEDS and are 18+, please consider enrolling in the vEDS Collaborative Natural History Study. vedscollaborative.org/get-involved