Is an Official hEDS Diagnosis Worth it?

Do you think an official diagnosis is worth it? Why or why not?

A diagnosis for this type of the condition can be a lifesaver if you have pain or dislocations that are to the extreme of being debilitating. Those with less extreme symptoms will find a diagnosis wiil still make their life easier. There are certain things that can make a diagnosis seem more valuable than you can currently realize. I heard that some people with hEDS have a symptom where local anesthetic won't work on them nearly as effectively and that can make things like surgeries very agonizing. Unfortunately there aren't many doctors that know about this specific symptom.

Wow, you make a good case. I wasn't sure if I should pursue it. Thank you! I suspect I may be hEDS, HED or formerly hEDS. Female, 45, now my shoulders are subluxing out of nowhere, hyperextended elbows hurting, and an overnight gluten intolerance! WTF?? The gluten kills my intestines and flares my sinuses. Terrible tightness in my hips not alleviated by stretching my my hips are very mobile despite my inner things and hamstrings and flexors being painfully tight. I gotta get some answers. So lucky I had a smart Harvard doc learn about my two shoulder surgeries during my teens and say with lots of seriousness: "What? You need an EDS genetic test and to be evaluated for hEDS." Seriously no one else even asked why I had the surgeries. Because our medicine system doesn't like treating causes. ALSO! My skin is super soft and lovely but the elasticity is terrible in my face! The eyebags are EPIC and the dark circles - nothing can be done. I just learned this is an EDS trait.

If we get diagnosed we will be part of statistics and also help raise awareness about our condition as well. This helps to incentivize more genetic research on the topic. After all, hEDS is not even rare, it happens in 1 out of 500 people. And we still have 0 disease-focused research, which is not acceptable at all. All of the comorbidities that come with it could also help if we get them on record. hEDS is not a little nuisance as many medical "professionals" like to imply, it really affects people's lives and well-being. ⚠⚠

My daughter was diagnosed with EDS and I had a genetic test done. I have Marfan's....I know they are related. I am the furthest thing from Marfan's - Marfan's people are tall, thin, have long fingers and toes, tend to have high blood pressure and aortic abnormalities. I am the exact opposite. When I went to my dermatologist he asked if I got my results of my genetics test and when I said it was Marfan's he burst out laughing. That's how much I am not the poster child for Marfan's. 🤪

I need an official diagnosis but there is nobody in my state that does the testing & going elsewhere is extremely expensive. I feel like it's super important because I have 5 kids & a few have some pretty intense things going on health wise that point to eds. Is there a place to go for help in these matters? I can't even get in to see some specialists because they say my health is too complex for them. Thanks

Thank you thank you thank you… I have my appointment tomorrow…

It is important for hEDS as well as other forms of EDS like classical to get screened for aortic aneurysm, because other connective tissue diseases have increased risk of aortic dissection, not just the vascular EDS. Marfans also has increased risk for aortic dissection. Plus there are a lot of comorbidities that go with EDS, like POTs and MCAS that have huge impacts on health and wellness, and quality of life can be greatly improved understanding and addressing these syndromes that often accompany EDS.

i thought theres not any genetic testing for fully diagnose heds

Does EDS change as people age (approx 60 or) and they become less mobile