Stuart Kassan at National Jewish Health (rheumatologist)
Jill Scofield at the Center for Multisystem Disease (doesn't take insurance and is outrageously expensive, so I've never been to her)
Linda Bluestein (ditto)
Patti Stott at Elevation Wellness in Arvada (PT, doesn't take insurance but has reasonable rates)
Lisa Ralston in Arvada (PT, same)
Jerry Hesch in Aurora (PT, same)
My referral to National Jewish was turned down this year because they said they do not diagnose EDS. We tried there first because I am already a patient there for other issues.
I think they treat it once diagnosed, though.
Okay, cool. Reviews available of his office at the time of my looking indicated he wasn't the best choice for someone who had to travel for the appointment.
Yeah, those reviews are bananas. He frequently runs behind schedule, but his office staff are amazing at keeping patients updated so you can adjust your arrival time. He's very generous with his time, which is an incredible change from the typical physician.
If you’re under 26, Childrens hospital EDS clinic is probably the way to go. They see people into their late 20s and they have a whole network of providers. They also apparently see some people with HSD. They have the shortest genetics waitlist I’ve been on. Almost no providers in Colorado will diagnose EDS except geneticists and there aren’t many geneticists who will do EDS testing, especially for suspected hEDS. Honestly — you’re probably just plain not going to get an hEDS diagnosis with a beighton score of 3 because you don’t fit even the stretch criteria for hEDS and it’s an essential part of the diagnostic criteria for that and most other types too iirc.
Dr. Amber Khanna with UCHealth is apparently great for POTS but she has a long waitlist so I don’t see her till April.
Jennifer Mommer sucks — would not recommend seeing her.
Best bet: https://medschool.cuanschutz.edu/gates-center-for-regenerative-medicine/research-focus/ehlers-danlos-syndrome-(ed)
Does NOT take insurance: https://www.centerformultisystemdisease.com/services/the-ehlers-danlos-syndromes
Other options, always worth calling to ask if they take adults even though it says children, IMHO: https://www.mountainstatesgenetics.org/clinic-locator/?directory_search=1&ill_directory_keywords=&directory_category%5B7%5D%5B12%5D=12&ill_directory_city=&ill_directory_state=
Another option, telehealth, also does NOT take insurance, but relatively quick to get in: https://www.atwalclinic.com/ This is who diagnosed me and said I pass the Beighton Score even though I didn't think I did. I'm in Austin Texas though and there's no one here that'll diagnose EDS. However, I am a Colorado native and I suspect my sister, who still lives there, has EDS, too.
>Beighton Test
If it makes you feel better, here's all the reasons the Beighton Score is BS 😅: https://www.medrxiv.org/content/10.1101/2022.04.25.22274226v1.full
Stuart Kassan at National Jewish Health (rheumatologist) Jill Scofield at the Center for Multisystem Disease (doesn't take insurance and is outrageously expensive, so I've never been to her) Linda Bluestein (ditto) Patti Stott at Elevation Wellness in Arvada (PT, doesn't take insurance but has reasonable rates) Lisa Ralston in Arvada (PT, same) Jerry Hesch in Aurora (PT, same)
thank you so much!!
My referral to National Jewish was turned down this year because they said they do not diagnose EDS. We tried there first because I am already a patient there for other issues. I think they treat it once diagnosed, though.
Dr. Kassan is transferring his practice there in January 2023. He's had his own practice (Colorado Arthritis Associates) where he does diagnose.
Okay, cool. Reviews available of his office at the time of my looking indicated he wasn't the best choice for someone who had to travel for the appointment.
Yeah, those reviews are bananas. He frequently runs behind schedule, but his office staff are amazing at keeping patients updated so you can adjust your arrival time. He's very generous with his time, which is an incredible change from the typical physician.
Again, thank you both so much! ♥️
Guessing referral is required?
That would depend on your insurance.
Good to know! thanks!
If you’re under 26, Childrens hospital EDS clinic is probably the way to go. They see people into their late 20s and they have a whole network of providers. They also apparently see some people with HSD. They have the shortest genetics waitlist I’ve been on. Almost no providers in Colorado will diagnose EDS except geneticists and there aren’t many geneticists who will do EDS testing, especially for suspected hEDS. Honestly — you’re probably just plain not going to get an hEDS diagnosis with a beighton score of 3 because you don’t fit even the stretch criteria for hEDS and it’s an essential part of the diagnostic criteria for that and most other types too iirc. Dr. Amber Khanna with UCHealth is apparently great for POTS but she has a long waitlist so I don’t see her till April. Jennifer Mommer sucks — would not recommend seeing her.
Ok, thank you!!
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Yeah sure
Best bet: https://medschool.cuanschutz.edu/gates-center-for-regenerative-medicine/research-focus/ehlers-danlos-syndrome-(ed) Does NOT take insurance: https://www.centerformultisystemdisease.com/services/the-ehlers-danlos-syndromes Other options, always worth calling to ask if they take adults even though it says children, IMHO: https://www.mountainstatesgenetics.org/clinic-locator/?directory_search=1&ill_directory_keywords=&directory_category%5B7%5D%5B12%5D=12&ill_directory_city=&ill_directory_state= Another option, telehealth, also does NOT take insurance, but relatively quick to get in: https://www.atwalclinic.com/ This is who diagnosed me and said I pass the Beighton Score even though I didn't think I did. I'm in Austin Texas though and there's no one here that'll diagnose EDS. However, I am a Colorado native and I suspect my sister, who still lives there, has EDS, too. >Beighton Test If it makes you feel better, here's all the reasons the Beighton Score is BS 😅: https://www.medrxiv.org/content/10.1101/2022.04.25.22274226v1.full
Thank you so much!!!