Do NOT use Sequencing, Invitae, 23&Me, other direct to consumer genetic tests for #EhlersDanlos or other conditions
#EDS and #Mito biogeneticist Dr. Fran Kendall discussed pitfalls involved in
DTC companies: https://youtu.be/0h3kLpsd_5s?si=7SmR3F4wxq1QQ-rO
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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
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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
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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
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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If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!
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/
Emily Johnson