Join a Community That Understands You

Get answers from those who share your health journey

Left Image 1Middle Image 1Right Image 1
avatar

sickgirl1234

Updated 1y ago

Should I Get Tested for H-EDS?

Im already diagnosed with fibro, but im also showing several signs of H-EDS. Is it worth trying to get tested?

Can you help? Connect today

avatar

Equinox

1y

hEDS typically doesn’t show up on genetic tests. It’s a diagnosis of exclusion, in most cases. You can ask a rheumatologist or similar doctor for a screening though. They’ll do the Beighton scale/score and go through family history (which is what distinguishes hEDS from HSD in most cases). Do you have parents that are hypermobile? Or what symptoms are you having?
avatar

the.misguided.girl

1y

I am in the same place. I was only recently semi-diagnosed with fibro (I say semi because they said I highly think it's fibro but hey the pain management (pm) team will say for sure) but I have been suffering with H-Eds symptoms for years so when I see the pm team I'm going to ask them about it.
avatar

FreyaB

1y

this is exactly where I'm at atm. I was semi diagnosed with fibro and had my assessment with the pain management team yesterday who also suspect Ed's.
avatar

LifeInMulticolour

1y

They haven't yet discovered the genetic marker for hEDS. They diagnose using the beighton scale, I think you have to score at least 8 to get a diagnosis. Have you looked at the beighton scale to see how many you think you fit to? Unfortunately the fact there's no official tests for it makes diagnosis a very subjective thing. What country you're in will make a big difference to how you go about getting a diagnosis.
avatar

charleystokes

1y

Yes it is as I got diagnosed with both at the same time x

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

feed-footer-0

Free unlimited access

to all community content

feed-footer-1

Find others who are

medically similar to you

feed-footer-2

Pose questions and join

meaningful discussions

pp-logo

Alike is a transformative platform that goes beyond just bringing together patients; it meticulously connects individuals based on multiple critical factors, such as age, gender, comorbidities, medications, diet, and more, fostering a community of knowledge, support and empathy.

appStoreBtngooglePlayBtn

© 2020-2024 Alike, Inc