Ehlers Danlos Syndrome (hEDS) diagnostic criteria | old vs current 

None but uk does have a hospitol team dedicated to it but wait l I st is 5 years as of rn

honestly I don't think i'd be the right person to do this, even though i'd be EXTREMELY interested in watching a video on this. I will keep this in mind though and see if there's any way I could do something similar to this!

I was diagnosed with EDS while living in Japan for a few years. I then had to get formally re-diagnosed and do the process all over again in the US when I moved back. The diagnosis process was by far much faster in Japan. Most doctors were not super knowledgeable, but they were very upfront about it and sent me to the correct places and people. It takes a lot longer to get to the right doctors in the US. In Japan I ended up mostly going to Tokyo Medical University. In the US I’ve mostly gone to Cleveland Clinic, Georgetown, and University of Virginia. Also, Japan has some really great social welfare mechanisms to support those with “intractable illnesses”, while the US basically has nothing. That is something that upsets me honestly. In Japan I had national insurance and then later had government employees insurance (private through mutual aid association), both of which were pretty much the same in cost and coverage. In the US I have a “high PPO” plan through a family member’s employer. Insurance in the US can vary drastically so I can only speak to my situation. That being said, for me the cost difference has actually been the same because I was insured in both places. If I was uninsured in both places, then the US would be astronomically higher. In the US my insurance has a $3000 individual out of pocket maximum (which i believe is actually lower than most Americans), while in Japan if you spend more than about $3000 you get some deductions for income tax. So hypothetically, you can spend more money in Japan than in the US if you went ham after hitting your out of pocket maximum, simply because there is a cut off with my US insurance. There are no copays in Japan, it is always a percentage based on your income. I was in the 30% bracket I think. This means testing/procedures and newer drugs are what become pricey, while appointments are very cheap. I tried a lot of medications and most drugs were $2-40 for a month, tending to the cheaper end. It should also be noted that my medical insurance premiums in Japan were around $300 monthly. There is no outpatient physical therapy in Japan at all, only for when you are recovering from surgery. If you want PT you have to find a private clinic, usually run by foreigners, and pay $100-300 each time. I never found a PT versed in EDS in Japan. In Japan most “small” medical equipment such as braces are not covered by insurance. While they usually aren’t expensive, for an EDS patient it can be difficult. There are sometimes confounding limitations in the medications covered by insurance. For example, zofran is only for cancer patients and Toradol is only for after surgery...? Hospitals will only go by your insurance policy, so the only way to buy something like Zofran or Toradol outside of insurance is to find a private clinic that doesn’t accept insurance at all, which ends up being very pricey. It is nearly impossible to get narcotics under any circumstance other than cancer, even surgery. In fact, most doctors say it is impossible which it used to be until like 2012 or so. Only a handful of doctors have the proper government permissions to prescribe. It is a lot of paperwork for doctors I think and the patient has to have a notarized letter of permission. Further, narcotics are VERY expensive, even with insurance. But I will never get over being offered a fentanyl patch while being told no to Toradol...? Another consideration for all medications and procedures is that dosages are tailored for Japanese bodies, which can be a challenge for westerners such as myself. “Here is 50mg of ibuprofen!” So overall, if you have a more serious case that requires a lot of testing, procedures, and newer medications then maybe you will spend more in Japan, but that is only if you have a lower out of pocket maximum in the US like I do. The big deciding factor is out of pocket maximums I think. Sorry this is jumbled, I am typing it on my phone. I literally kept a binder with every medical receipt from Japan, so I have meticulous records I could look back on for specifics. Haha. But I hope maybe this gave a tiny bit of insight into a US vs Japan system comparison.

Jo Lochary I did a history search on EDS years ago, I found it originated from Scotland and spread all over UK and the world, I haven't looked in a few years but UK is the capital in the world for EDS cases. So logically speaking the people with it the most and the doctors, surgeons and specialists seeing them would be more experienced in treating and coping with EDS. Peace and Blessings

Annie this is an awesome comparison and deserves an award Peace and God Bless

The Toronto EDS clinic also uses the new criteria overly aggressively and harms patients by shoving them into the HSD bin even after they wrote that article! And their RNs aren't aware of their own research or the problems their clinic outlined about the 2017 criteria and actually tried to gaslight me (but nice touch that their clinic notes say not to disbelieve HSD/hEDS patients because they often have been mistreated by medical staff... maybe they should make their staff read that statement before allowing them to cause harm?)

@@jadesimon9880 wow that's wild! I'm really sorry that that you've been harmed by the EDS clinic in Toronto :( . I was just speaking from a scientific point of view since I haven't been seen by that clinic (I don't even live in Toronto). I feel like doctors just need to actually listen to EDS patients as a whole :(

Lumos Nox im going to touch upon this in a video!

I was wondering this too

I think it's because they can't completely prove it so they can't include it. Makes no sense that they can't prove it to me but whatever.

I think this should be a present-day minor criterion equivalent. Like where if you would be diagnosed with hEDS if only one more thing was true in addition to the present-day criteria, this should be one of those things that gives you an extra point (I'd say 2+ comorbidities would be reasonable to get credit).

Because correlations do not equal causation under any circumstances. It would have to be undoubtedly proven and accepted that hEDS causes those abnormalities. They’re just not there yet with the research and technicality of it all. I do agree that they all are correlated heavily and could be caused by hEDS, but until anyone comes up with a 100% proof of it, it’s not going to be part of any diagnostic criteria.

so many people also struggle with a lot of pain!! It's to varying degrees, but im sure there are people who expereince EDS in similar ways! If you're looking to connect with others who fully understand you, id highly suggest checking out some EDS support groups on facebook! xoxoxo

Me either so my doctor wouldn’t “diagnose” me with Eds even tho I have all of the symptoms

Mills' Skits yes I’m planning on doing this and other tests of hypermobility!

@@IzzyKDNA Thank you so much! :)

@@IzzyKDNA I read the description online but don't understand what they are trying to describe... I know I'm hypermobile in more joints than the main ones too.

Do you have co-morbids too? Maybe try test again?

I just added my main sources in the description. i believe it was the fourth one!

Hey! First of all, disclaimer: I don't have a medical degree or work in a medical field. I only have *some* knowledge of genetics, it's always safer to ask your doctor about it. TNXB (Tenascin X) is a protein that is part of connective tissues. It is encoded in the DNA as the so-called "TNXB Gene". In order for the TNXB gene not to enable the production of the TNXB protein, it must be different from the "normal" TNXB gene. The TNXB gene has two occurances in the DNA (we'll call this allele; yes this is slightly inaccurate but better to understand). One of your TNXB gene alleles is abnormal but it's variant is unknown. This, however, does not matter for a potential clEDS diagnosis because clEDS is recessive, meaning that you need two defective alleles. I don't know whether it can be harmful but from what I understand, your DNA includes a sequence of the correct TNXB production instructions. The information about how the TNXB protein is made correctly is only present once in your DNA. If it was not present at all, you would be diagnosed with clEDS. Hope this helped you. :)

Hey! I think this is a great questions to talk about with a genetic counselor or geneticist! i understand clEDS to a certain extent, but im not able to interpret results or anything.

@@IzzyKDNA Thanks you both for your informative answers! My geneticist told me that I'm carrier of a potentially harmless variant and in order to get sick from clEDS I need to have two pathological variants so it's unrelevant for me but I'm still concerned.

you dont need hernias to pass the EDS criteria. also the first part of the criteria, 20% of the population or so will pass. it only tests hypermobility and most causes of hypermobility are not EDS. I hope this is a bit helpful. maybe you are just hypermobile and there is something else csausing your pain like an auto immune disease or something else

Korra Price I got you! Already on my list and hoping to get to it soon!

@@riley3984 yeah, I'm definitely bringing it up! Thanks for sharing :) Also, I didn't know about the hearing loss. In my family we don't know where my issues come from because there are signs of my illnesses in both of my parents' sides. For instance, my mother is hypermobile. On the other hand, my grandma on my father's side has had to deal with orthostatic hypotension since she was a young woman (it honestly sounds like POTS to me but I don't want to diagnose her, obviously). She's also deaf. She started having some hearing loss and then suddenly one morning when she woke up she was completely deaf (I think she was around 60 at the time). Doctors have never found an explanation as to why that happened, so now I'm wondering if that could be related to EDS... It's all speculation, of course, but I find it interesting anyway!

Yes!! I tried to make the zebra sticker inclusive by making the second biggest word "HSD," but i dont have anything that's specific to HSD so i'll see what I can do!

@@IzzyKDNA Ekkk off to etsy to buy them because I did not look very close the first time!

Crying Hippy we know all of them other than hEDS! The ehlers danlos society details the mutations on their website if you’re interested in learning about it!

Izzy Kornblau last research update I knew was only vascular and classical can be diagnosed with a genetic test. So only hyper mobile now is the only one that can't be tested genetically? Wow the gene mapping has come along way in last 5 years if so Pat yourself on the back if you submitted your DNA to EDS research in Washington years ago I gave up on meds and the medical industry before diagnosed and got back into it after only to find there is nothing except here take this pill and sorry I don't know what EDS is I'm still in the same vote and living in north Americas 4th largest city with no doctor and was told today by another phone Doctor that EDS is not deadly I give up Hugs and Blessings

i didn't know this! I assumed most countries would follow the ehlers danlos society criteria. Thanks for letting us know!

Wow, it sounds like you're really really suffering. Based on what you said, I would see if a different physician would diagnose EDS - especially since you think you do have it. Misdiagnoses happen all the time.

i think people just dont know that the roman numerals are no longer correct to use

@@mollymarino5974 I don't know if there's anything correct or incorrect about using Roman numerals. I just find them unnecessarily hard to read.

Since then I’ve worked out on the alternative criteria to Beighton I score 8…. I need to jot this evidence down ahead of my assessment