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

#ChronicIllness #Disability
#HealthUpdate #EDS #MCAS #Anemic

http://thecrippledcryptid.com/2026/05/30/saturday-health-update-doctor-fatigue-and-stormcloud-bruises/

Saturday Health Update: Doctor Fatigue and Stormcloud Bruises

Sometimes being sick feels like a full-time job you never applied for and can’t quit. This week brought another doctor’s appointment, another blood draw, another collection of stormclou…

The Crippled Cryptid.

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If not, they may have limited to no #EDS experience or basic outdated med school learning — see an expert!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

Summary here: https://www.mitoaction.org/wp-content/uploads/2021/01/Kendall-DTC-Testing.pdf?fbclid=IwZnRzaASFaBJleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEef7E3Pnj-s62Hnv_HpgzoOwec5r_a7OFPHAJisUU8PphPFqDx1oMHLSYcONg_aem_zMWL96G0odDHH20pKMLwpw

1/4 🧵

DTC Testing - Power & Pitfalls

YouTube

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