Is an Official hEDS Diagnosis Worth it?

In this video, I discuss the many reasons why I believe that an official Hypermobile Ehlers-Danlos Syndrome diagnosis is indeed, worth it. Why do you or don't you think it's worth it? Let me know in the comments!

Want to help support my channel for free? Simply like, subscribe, comment, and share these videos! That will help them reach more people and spread awareness and education about EDS.

Thanks for watching!

[ehlersdanlosandi]

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

[JanustheXanus]

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.

[VizzyInks]

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. ⚠⚠

[PeaceOutParty]

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.

[tiffariff]

Yes, completely, beyond just research and statistics and increasing funding for help on condition, it can significantly help improve quality of life. Even if you don’t have severe symptoms, after doctor #3 of EDS suspicion, I sought it out. Now I can confidently tell doctors I have it with it officially in my records, with a direct answer to “why do you think so?” It’s no longer challenging me if they don’t think I have it, but a much more qualified doctor. Not only that, but my mom who was much older so no longer flexible, it began explaining so many of her own issues. The comorbidities matter, because you’re more likely to have complications or things a doctor may not immediately jump to. It helped explain why my mom had to go to a wound clinic to get a surgery infusion fixed, why her gut is so slow that led to so so many issues from gastroparesis, diverticulitis, hiatal hernia, etc, and why she had to get so many joint replacements. As her daughter, I get to see these and see the signs early and begin changing my life style to minimize the conditions- I already have a slow gut, so I’m going my best to manage it so that I don’t end up finding out about x issue it caused later down the line due to me ignoring it. Not only that, I can seek aid for getting physically in shape with significantly less risk of injury since I can get physical therapy to stabilize my joints and guidance on how to be active while minimizing the wear on my joints.

[CASBBFZ]

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

[KiahSilverdew]

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. 🤪

[gotglint.]

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

[pacificangel]

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.

[saturnstudios]

I have a question! Are hEDS and femoral anteversion related in any way?

[bookgt]

i thought theres not any genetic testing for fully diagnose heds

[TheOnlyLila]

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