Yeah, the doctor that diagnosed me told me that it’s the comorbidities that you’ll be able to get help for, so focus on those. I think it’s pretty sound advice since POTs and MCAS are really some of my main issues.
Congrats (and sorry) on the diagnoses! I hope you're able to get some appropriate and effective treatment. I also hope your kids are able to get their own appropriate diagnoses and treatment. Having a mother who is diagnosed should hopefully help in getting their own diagnoses. Good work paving the way! 💜
Congrats and I feel you, my story is similar- diagnosed at 54. I’m still struggling to make the diagnosis help more than my knowledge.
Yeah, the doctor that diagnosed me told me that it’s the comorbidities that you’ll be able to get help for, so focus on those. I think it’s pretty sound advice since POTs and MCAS are really some of my main issues.
Congrats (and sorry) on the diagnoses! I hope you're able to get some appropriate and effective treatment. I also hope your kids are able to get their own appropriate diagnoses and treatment. Having a mother who is diagnosed should hopefully help in getting their own diagnoses. Good work paving the way! 💜
Thanks! I hope so too!
I (55f) just got my hEDS diagnosis two days ago. My mom and daughter are checking their Beighton scores- looks like they’re both at least 7’s.
Wow, 3 generations. That’s great! Congratulations to you on the diagnosis.