some capsules are arriving this week and i just want them to get here already. this constant crashing while i am just trying to watch a show...its such a small thing and thats why it makes everything feel so hopeless. its a very small thing to want to do

#longcovid #ehlersdanlos

If you need an #EhlersDanlos #EDS geneticist expert, I recommend Dr Fran Kendall

She’s recommended by The EDS Society, Shes also a #Mito expert which many with EDS have, she does telehealth and takes insurance, does research, goes to the conferences etc https://www.vmpgenetics.com/

P.S. “My doctor/geneticist uses/is OK with me using Invitae”

Is your doctor an expert #EhlersDanlos geneticist recommended by The EDS Society? Are they authors on EDS consensus criteria papers?

If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!

DTC issues:

1) don’t test for all #EhlersDanlos types with diagnostic genetic biomarkers

2) only have genetic counselors, not expert geneticists in #EDS (or whatever else you’re testing for)

3) data is incomplete/wrong

4) no report or an incomprehensible one due to 3 so doctors can’t use it

2/4

Patients must see geneticist experts in #EDS #EhlersDanlos or other conditions for complete, legit geneticist tests and care

Especially for types in dark genetics like #hEDS, aka types without a diagnostic genetic biomarker

So many with delayed care, wrong info, harm from DTC! Save your money

4/4

I’ve warned #EhlersDanlos #EDS patients for many years to not waste money/time on DTC tests

Predatory ads from DTC companies made more clinicians and patients use DTC

LabCorp acquiring Invitae and non-expert clinicians using invitae does NOT solve the above issues, it only worsens them

3/4