MeilanS
@meilans.bsky.social
I would love to ask you questions as we navigate getting my daughter the help she needs before she becomes more disabled. Thankfully, her college is not far from the Mayo Clinic, and I hear they have some good EDS specialists, but we are from NYC. Thank you for this article.
March 10, 2025 at 6:59 AM
I would love to ask you questions as we navigate getting my daughter the help she needs before she becomes more disabled. Thankfully, her college is not far from the Mayo Clinic, and I hear they have some good EDS specialists, but we are from NYC. Thank you for this article.
She is a dancer and a sophomore in college, she is not as severely symptomatic as your daughter, but she is getting worse. She often dislodges her collarbone while SLEEPING. Chiari malformation has been brought up, but her recent cervical MRI didn't show that...but, she was laying down!
March 10, 2025 at 6:58 AM
She is a dancer and a sophomore in college, she is not as severely symptomatic as your daughter, but she is getting worse. She often dislodges her collarbone while SLEEPING. Chiari malformation has been brought up, but her recent cervical MRI didn't show that...but, she was laying down!
We already know she has EDS, but we have been to specialist after specialist trying to figure out exactly the problem. .
March 10, 2025 at 6:57 AM
We already know she has EDS, but we have been to specialist after specialist trying to figure out exactly the problem. .
I just saw your article. Not only did I just get a letter denying my surgery, dating the day AFTER it occurred(yes, it had been approved), but my 19 yr old daughter has nearly the exact same symptoms as your daughter.
March 10, 2025 at 6:55 AM
I just saw your article. Not only did I just get a letter denying my surgery, dating the day AFTER it occurred(yes, it had been approved), but my 19 yr old daughter has nearly the exact same symptoms as your daughter.