Stormcloud bruises, doctor fatigue, spicy bird seed, tomatoes, and Luna's upcoming surgery. Another week in the life of your local cryptid. 🖤🐾🍅☕ linktr.ee/skylanarissa
Stormcloud bruises, doctor fatigue, spicy bird seed, tomatoes, and Luna's upcoming surgery. Another week in the life of your local cryptid. 🖤🐾🍅☕ linktr.ee/skylanarissa
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If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!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
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
1/4 🧵

I'm really struggling with chronic pain due to my genetic disorders, I'm not able to afford multiple meds, & I'm *not* okay.
If anyone can help/share, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $80USD 😖 I HATE asking, I feel like a JERK, but I don't have other options.
PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla
#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled
I'm really struggling with chronic pain due to my genetic disorders, I'm not able to afford multiple meds, & I'm *not* okay.
If anyone can help/share, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $80USD 😖 I HATE asking, I feel like a JERK, but I don't have other options.
PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla
#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled