The Science of Ehlers-Danlos Syndrome | Sci Guys Podcast
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- čas přidán 8. 09. 2024
- You might have heard of EDS, but it's a bit more than stretchy skin and doubled-joints, this week we dive into a range of Ehlers-Danlos Syndromes in this episode voted on by our patrons!
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Are you double-jointed?
Yes
Yes, I hate it🙃
I have ehlers Danlos so yes I am double jointed
Yes, all of my joints bend backwards and some of them can nearly 360 :)
It was super cool until my body literally started falling apart every day :/
Yes! If i put my hands together I can basically use my arms as a skipping rope as they rotate fully around myself, My elbows can also bend the wrong way lol
There is a genetic test for all types of EDS, except the Hypermobile type, hEDS, which is the most common type…Also, hEDS is not nearly as rare as they once thought. The number of cases is growing and growing, and it’s because so many people have been going undiagnosed for many years. The medical community is kind of just starting to wake up, and we’ll be seeing that rarity become less. I personally have hEDS, and within my circle of people I know, just in my neighborhood and in my company I know several others who have it. I’m talking out of just a few hundred people…I know 4 other people so far who have been diagnosed with it. I also have another local friend w/ it. Met her through a dog adoption. So the EDS world is getting smaller-or bigger, I guess I should say. Unfortunate for those who suffer, but good that we aren’t alone anymore, and someday sooner than later we will all be heard, and cared for better than we are now. Thanks for being a part of spreading awareness. So important. Don’t be quiet, EDS’ers. Use your voices and share your journeys on social media. It helps! 💜
So grateful to you for highlighting this condition, it's often so misunderstood, if it's even acknowledged. 🦓
oooh i’m excited for this one!!! I have EDS and it’s always nice to see people accurately discussing it.
Some of my experiences if anyone is interested:
-i once ate a salad so fast it dislocated several ribs
-every morning i give the most dramatic shrug as soon as i sit up to put my collarbones back
-i can audibly pop every single joint in both hands. it is incredibly satisfying.
-i sprained my ankle over 18 months ago and it hasn’t fully healed
-i was in a car crash 2 years ago, and got a lot of glass pieces in my knees. the scars are quite dramatic, and shocked even my EDS specialist Dr.
-i’ve hurt my fingers from crocheting too much, which is a very “old lady” problem for a 19 year old lol
-my skin and hair are incredibly soft no matter how i treat them
-because of that, adhesive rarely actually sticks to my skin. this is extremely annoying, because if it *does* stick i might end up with a scar when i finally get it off
Do you have classical EDS? My best friend does and I sat with her in the ER after she fell on a treadmill and tore her knee open. It looked like someone had pulled the skin back to expose all the tissue over her kneecap. It was terrible, but I kept her laughing while the doctor spent easily an hour or more cleaning out the wound before flipping her skin back over and stitching her up. They were all surprised that she could laugh about it, but she’s dealt with chronic pain most of her life.
@@wryn.is.tryingive also hurt my hands from crochet!! my physio keeps on talking abt how ‘well athritic old ladies can knit so’ ok but why can i not crochet for more then 5 minutes as a 20 YR OLD
I was recently diagnosed with EDS… super interesting and informative episode. My aunt said this to me because she also struggles with it. “Pain is inevitable but suffering is optional ” thought I might share
Great episode! If you’re ever interested on revisiting the topic or similar, there is really interesting research being done Into the comorbidities and links commonly seen with EDS that don’t have a clear explanination. MCAS/MCAS, adrenal insufficiency, autism and gender identity etc.
Mast Cell Activation Disorder/Syndrome MCAD/MCAS , in simple terms causing people to have allergic reaction responses to many things, in some cases anaphylaxis to nearly all foods, chemicals, perfumes leading to tube feeding of specialised hypoallergenic formula and being restricted to air filtered rooms.
This can be described in articles as ‘allergic to the world’ or ‘bubble girl/bubble boy’. As far as I’m aware they don’t know the link to EDS but it is effecting peoples care. Specialist in MCAS, especially in London, are turning down patients with EDS because as a non-curable condition and it’s complex nature, is making there successful treatment outcome statistics ‘look bad’. So many EDS patients with MCAS can’t get management of symptoms because the few specialist there are will not take them on.
There is also research going into autism and EDS at the moment. As well as the links between EDS and gender identity. I’ve had friends directly asked at gender clinics if they have a history of hyper mobility, as the staff are starting to see trends of people transitioning commonly having a diagnosis or symptoms of EDS/ hyper mobility.
Then you get into the effect of hormones on EDS. Muscle mass can reduces dislocations and improve dyautonomia/POTS, and this is being seen in trans masc people with EDS taking testosterone having many EDS symptoms become more manageable. A friend of mine going from using a wheelchair to walking unassisted when taking T. And then with trans fems with EDS taking oestrogen starting get more joint issues etc.
This skims the controversial topic of how EDS presents differently in men and women and the potential for inaccurate statistics on prevalence of eds diagnoses
There is so much we don’t know and it’s incredibly interesting! As someone with in EDS who works in healthcare It’s so great to see the science perspective and the awareness and education it brings to people.
I have EDS, am a trans man, and am currently in the process of trying to get an MCAS diagnosis; thank you so much for bringing this up I personally appreciate it
Maybe doctors can tell trans femme people that if they take E, they should also start working out? I know that a lot of trans women won't want huge, masc-looking muscles, but they should be able to develop nice-looking muscles that won't grow as large as if they continued having large amounts of testosterone in their systems.
OMGoodness - YESSSSS! I am so curious on the data related to hEDS & FtoM. I'm a parent/layperson trying to poke around the research and communities for more info, not getting very far, but seems to be a population that should be heard from. Glad to hear on improvements for your friend after t and thank you for sharing about this hEDS topic.
I have a trans son and didn’t realize there was a correlation. He is autistic though.
I am a transmasculine person too! I am 3 months on T and also have ADHD which is common on hypermobile people. It really is interesting this world and its misteries.
Yes i'm double jointed but that's because i have LDS.
Loeys-Dietz syndrome (LDS) is a recently described genetic connective tissue disorder with a wide spectrum of multisystem involvement. LDS is characterized by rapidly progressive aortic and peripheral arterial aneurysmal disease. LDS and the other inherited aortopathies such as Marfan syndrome have overlapping phenotypic features. However, LDS is characterized by a more aggressive vascular course; patient morbidity and mortality occur at an early age, with complications developing at relatively smaller aortic dimensions. In addition, there is more diffuse arterial involvement in LDS, with a large proportion of patients developing aneurysms of the iliac, mesenteric, and intracranial arteries
About the unknown prevalence, you forgot to mention medical sexism: this syndrome affects much more women than men, and doctors have a nasty habit of dismissing complaints from women about pain and fatigue, often gaslighting them about the severity of their symptoms. And the prove is that it takes on average 4 years for a man to get diagnosed, while for a woman, it's 16 years.
Happened to me, for years I was told I was fine, and that my symptoms were more likely psychological. Aka, "young woman, ya crazy".
You’re right, and it took me almost 60 years to be diagnosed.
Aaronisahouseplant (Aaron Ansuini) is a youtube creator that has EDS, he's spoken about it a few times in videos. You might search for him on CZcams if you're interested in seeing someone with EDS talk about it! I immediately thought of him when I saw the title.
Jessica Kellgren-Fozard and Annie Elainey also both have it. I’m sure there are other cool creators who also talk about it but can’t think of any more off the top of my head
Annika Victoria has it, too, but they rarely post on CZcams anymore :(
@@charliev4156 Izzie Kornblau and Christina Doherty are the only other ones i can think of off the top of my head, but neither of them posts here often anymore. Izzie is in grad school now, so she posts more in-depth science stuff :)
Same! Bless Aaron
@@charliev4156 If there was a round table on EDS or POTS or their other chronic illnesses with Aaron, Jessica, and Annie, I would be over the moon with happiness.
Are there any other Marauders fans who have noticed that Corry would make a perfect fan cast for James Potter? Like the glasses, the hair, and the deer tattoo are just too perfect
YES
I got diagnosed with hypermobile EDS under a month ago after a life of difficulty. Though, not all people with EDS have stretchy skin. Mine is not stretchy at all, it's very soft, fragile and tight and can barely be pinched at all (and even that little hurts af). Though a good thing about it is that my skin feels very pleasant to other people :"D which is good because I like to be petted.
Same. hEDS, soft fragile skin, no stretchiness.
12:20 it’s called hitchhikers thumb I think- I have it and people always seen quite surprised when I do a thumbs up, but cause my thumb has bent more than it should it actually points to the side😂
About thirty years ago a friend with EDS died from a collapsed heart valve. He was 33.
They had to have vEDS, the vascular one.
EDS and transmasc here! my skin is not stretchy like others but i wanted to chime in if it doesn’t get said: since starting testosterone i’ve been able to build more muscle around my joints. i have more balance, and for the first time in years pain free days! it’s not a treatment i recommend for anyone without gender dysphoria, but if your trans and have EDS, look into testosterone! muscle helps the pain (doesn’t fix everything but it’s a million times better for me now)
I'm screaming i'm so excited! both I and my sister have hyper-mobile EDS and I'm always wanting to learn more! thank you so much for this this made my week.
as someone with EDS it’s so wonderful to see an episode being made about it! i’d love to see a more in-depth episode that goes into greater detail about its effects in day to day life, living with chronic pain, and treatments you can do to help lessen the symptoms and their impact on your life. (i.e. physical therapy, supplements, so on)
God, everything when Cory started talking about his experience with health diagnoses….the terror of being in absolute pain and exhaustion, not knowing why, and not having any reason to believe it will end because you don’t know what it is. I have all of the feels right now .💜
EDS person here! Thankfully, I was diagnosed really young. Chronic pain and fatigue are my main issues.
Considering how rare is supposedly is, I've met a lot of others with it.
I was diagnosed with EDS sometime in 2019. I was lucky enough to have been able to do a lot of my own research so that I could come to my doctor with specific questions and experiences to share so that she could see if the diagnosis was right for me. I'm constantly in physical and occupational therapy and sometimes I'm just completely hopeless about my future...
Thanks for doing an episode on this! I'm glad people will be able to understand this a little bit more so they don't think I'm just being a jerk when I'm in so much pain I don't have much patience 😫
You should do a colab with Jessica Kellgren-Fozard who has it! She's incredible!!
Can be diagnosed with genetic testing! It’s a common method for diagnosis for EDS (as someone who has done that)
True you can test for most types but there is no test for hyper mobile eds
Yay I'm so excited for this episode. I personally really struggle with hEDS and it's comorbidities!
Thank you for discussing this thoroughly and respectfully 🙏 There are SO many people who just do not understand EDS and how it affects every single system in our bodies. I appreciate you taking the time to really understand.
Also also... You're the first person I've ever heard to actually mention how it impacts the spine. MY DUDE... Our brains and spines are COVERED in connective tissue and when it starts falling apart everything goes downhill.
There's a clear correlation between EDS and ADHD, too. It's a *special* genetic package.
This was a really interesting episode. My AFAB teen is a year and a bit into trying to get a diagnosis for their chronic joint pain/fatigue/headache/brain fog/ insomnia/abdominal pain (and they were diagnosed with kyphoscoliosis a year ago). These are symptoms of so many things, but EDS came across our radar. Their joints are cracking and popping all the time, and they have pain in nearly every joint in their body at one time or another. Oh, and if they exercise (play football, run, etc.) their knees buckle and they fall down. Nothing dislocated yet, so we're looking at a lot of different possibilities. Dealing with doctors has been beyond frustrating. The lack of curiosity is appalling. And because my kid is AFAB, the docs just want to say it's anxiety. Well, you'd be flipping anxious too if you were in pain like that every day. What you said about diagnosis is so important. We're basically assuming this could be lifelong, but they just want to know what it is so they can learn more about it and find their community. It would be nice to find a medical professional with that kind of curiosity. But getting any kind of diagnosis can take years, so we've resigned ourselves to that.
please please please do an episode on chronic fatigue syndrome!
When I have a joint or multiple joints that won't go back in or keep voming out, it's so painful and frustrating that I have gotten depressed and unalive-al from just the pain and the frustration knowing this will be day in and day out.
That said, me and my friends will definitely have a good laugh if we're mucking around and I pop something else so they "win" the "play fight" sort of thing. Things like that are sort of funny, and them being there to laugh WITH me, and also support me on the bad joint and mental health days, makes it so much more bearable.
I have EDS! 😮 (hEDS) also- it’s not double jointedness lol my doctor said hyper-mobile EDS is often misunderstood as double jointed but it’s actually just loose, unstable, and or clicky joints. That’s why I’m so susceptible to fractures and breakages. I also have Autonomic dysfunction on top of it so I’m all kinds of messed up. Sure I have the most common Eds but it causes me all kinds of issues :/. And I’ve also been told my skin is super soft, I bruise so easily, I get lightheaded quickly, I become clumsy, and the chronic pain is so intense. I have a good and bad days. So hard to be a teenager with conditions and all the adults around you are telling you you’re too young to be hurting or having any issues. :/ my Autonomic Dysfunction causes the automatic functions in my body to not work properly and cause a bunch of issues in other places of my body you probably wouldn’t consider. Anyways, anyways been this way but didn’t get an actual diagnosis until I got my genetic testing when I was 16 (17 now). The only reason I got my diagnosis as quick as I did is because my dad also has it.
And on top of all this because of my lovely mothers mix in genes I have Combined ADHD, (SGAD) Sever generalized anxiety disorder, OCD, and a hypersensitivity disorder . :/
I recently found out that it is possible to genetically test for EDS and am working on getting diagnosed. I also have friends with it so this was a great episode to listen too!!
Its really cool when I can pop my shoulder out of the socket when I intend to, not so much while im lifting weights 😬
i've been having chronic health problems for a few years now. my psychiatrist just brought up EDS. i'll be bringing it up to my PCP in december and get some referrals.
crazy coincidence!
Never heard of your program before, but you came up on my youtube feed and I am hooked after seeing this episode.
My entire family has h-EDS and it was really enjoyable to hear someone bring it to widespread public attention.
I thought in general ya’ll did a great job of running through the basics.
One thing I did want to bring up: an additional reason why ppl who suspect they might have h-EDS might want to be evaluated for diagnosis -- even if this is not causing them major health issues.
Part of h-EDS is that it causes fragile tissues. This means your tissue isn’t always strong enough to hold stitches. In the event, deity of your choice forbid, you have to go into emergency surgery, if the ER / A&E knows that you have this mutation, there are things surgeons can do to strengthen the stitches, including surgical glue, to increase the likelihood that your skin can hold the stitches until you have healed enough that it doesn’t matter if a stitch gives out. The idea of stitches giving out doesn’t sound so scary if you think of one stitch giving out on your knee. But what if it’s 8 stitches giving out on a blood vessel? That’s the kind of tissue fragility we are talking about. So if surgeons know you have this mutation, they can plan additional measures to increase the likelihood stitches will not give out, and put you on an increased hemorrhage watch.
It's also worth noting that all types of Ehlers Danlos have a higher maternal mortality rate than the general population. So if you want to have kids, or in the event you have XY chromosomes, if your daughter wants to have children, it is not a crazy idea to know if you have this mutation before getting pregnant on purpose.
20% of the population is hypermobile, and 80% of that 1 billion ppl never have any health issues. So don’t think of hypermobility alone as a warning sign. Most ppl who are hypermobile, aka double-jointed, don’t even know they are, because it is completely normal to them to be able to move in such a manner.
I could do a full episode worth of information on this health issue; I was the first person in my family to be diagnosed -- I actually had to bring the research to my doctor and ask if this could be the health issue behind all my unexplained health issues.
I just wanted to make sure ppl knew, even if you are not experiencing disabling health problems, if you are hypermobile and have a number of mild health issues that are co-morbidities of Ehlers Danlos (blood pressure, gut motility issues, low immune response, slow healing, etc.), and are wondering about whether or not Ehlers Danlos could be the underlying cause, it’s not necessarily a crazy idea to be evaluated. Worst case scenario is if you end up in ER or A&E, surgeons know to keep a closer eye on you.
My mom has Eds, and I have some symptoms. Haven’t finished the episode yet so idk if you talked about it, but it is commonly paired with POTS and MCAS, which if you have one, you might have at least one other.
yessss i suggested this topic on patreon and i'm so glad you've done an episode on it. excited to see it! 🎉
My sister, mother, grandmother , my kids and grandkids have a combo of hEDS, Autism, gastroparesis, MCAS, and so much more.
People with EDSs are also more likely to develop CRPS (complex regional pain syndrome)through all the injuries we get from dislocations, sprains, etc.
Thank you for talking about EDS! My husband and I both have Classical type EDS and it's been horrific. My husband became disabled, had to leave his job and got diagnosed when I was pregnant with our third baby. He was in so much pain and frequently in hospital.
I started getting sick soon after and thought it was burn out from having 3 kids under five and a disabled husband. I was also diagnosed with Classical EDS. I'm now mostly bedbound and can't work. Our kids each have a 75% chance of having it.
I'm so happy that you chose to cover EDS. I have Hypermobile EDS and it's so great to see you guys talking about this with so much accurate information thats also easy for everyone to understand. Sometimes it can be hard for people in my life to grasp why I hurt so much, and why my illness debilitates me so much, from now on, I'll just have them just watch this video. Thank you
I've been tracking down a diagnosis for what's been going on with me, and after a year of discovering it, EDS still seems to fit every symptom. I recently was blessed to find a doctor who knows what this is. Problem is, there is no longer any genetic testing for EDS available in my area. Aye...
I am double jointed (hyper-mobility). I have some other issues as well which prompted my doctor to suggest I get a test for EDS. Like loose joints that dislocate just because. The test said no.
Not all types of eds can be tested for in a blood test though..
@@Cynthia63636 I didn't know that. I hadn't thought of it or looked into it before my doctor suggested it. Thank you for the info.
I definitely suggest looking into the rare diseases that are all pretty similar but also different ❤️ there's a bunch that doctors don't all know enough about, eds, me/cfs, pots, panda, fibromyalgia, mcas etc.
Good luck ❤️
Do a full episode on Fibromyalgia!!!
I'm hypermobile. 27. Undergoing diagnosis process for adhd, Autism, eds etc. Thanks for the episode. Would love another x
🎉🎉🎉🎉 thank you for discussing this. I have it and just thank you for the opportunity to share this information with others ❤
There are a few other conditions with stretchy skin that are adjacent to collegen. The other thing is AMAB Hypermobile EDS patients tend to have way less symptoms compared to AFAB
I have a ton of symptoms and my brother is so very mild.
New research is being done into the role hormones play in this disorder. They are seeing that Tran men and Trans masc individuals who start Testosterone are seeing a symptom reduction (new in process research)
As a trans man my hypermobility symptoms have significantly improved (2 yrs on t)
I still hyperextend but I don’t get pots problems or anything lol
I really enjoyed this episode! I've listened to them all and love y'all and all the work you put into the episodes, as well as the guests you have on (especially Noah). When you guys do the Fibromyalgia episode, if you wanted a personal experience, my mum has been diagnosed with Fibro for many years 👀
Yoo! I recently found out that I have EDS, really cool to see my favourite podcast talking about it
Same!
I am “double jointed” have hyper mobile EDS so far from what I know. Am autistic , have crohn’s and dysfunction of my autonomic nervous system. Bloodwork and tissue samples barely show anything wrong or don’t at all. I present more clinically/physically/visually.
May be said further on but I'm at 18min and Cory adhd is highly comorbid with eds...
I was diagnosed with POTS and EDS at the same time. It’s been wild 😅
Maybe an aspect of ELD is also like ASD? So there seems to be this idea that it's super rare but if some people have been having problems for years but it never gets alerted to doctors or if the symptom expression is not as impactful on the body--then these cases of EDS aren't being counted. In the past 5 years, I've also interacted with more than 5 people who either have debilitating EDS themselves or are related to someone who does by 1 degree and I live in a very small area. I think EDS is actually significantly much more prevalent than formal stats present and with the internet--I think awareness increasing from CZcamsrs with EDS like Jessica Kellgren-Fozard and Martina Sazunic (creator of King Kogi and co-creator of EatYourKimchi) etc., is helping more people ask their doctors to investigate the option of EDS whereas before, people were being misdiagnosed or not diagnosed at all.
hey could you please do a video about the science of cerebral palsy? i have it and i never see it discussed in the media :)
Thank you so much for talking about this!
I was diagnosed with EDS a few years ago. So yes, I am indeed Hypermobile. 😁
“I am in pain and I don’t know why.” Tooooo accurate (I’ve got fibromyalgia & ADHD, among a couple of other things 😬 I’m also trans 😂)
you may want to get checked out for hEDS. It's really common in those with ADHD and fibromyalgia. Not nearly as rare as the other subtypes! I also have it, along with fibro and ADHD.
My sister has this! It’s hard for her with lots of joint pain. She wasn’t diagnosed brio she was 18
You don't have it? lucky you both me and my sister got EDS 😢
Yes, I am double jointed. I also have EDS.
hypermobile EDS really isn't that rare. It's vastly underdiagnosed! It's much more common than people think. I have hEDS and I've told multiple people to get checked out for it who ended up having it.
there are genetic tests that can help you get diagnosed but not with hypermobile eds. We don't have a gene identified for that yet.
Thanks!
Yes I'm double jointed and I have hEDS
I have hEDS and it really can be debilitating and painful.
I’m relatively double jointed, more in some joints than others
Oh on the subject of skincare, things like vitamin c, being very acidic can be good for certain things on your skin, but rubbing an orange would be less bioavailable because there are many many cosmetic chemists working on skincare stuff to make sure it actually is able to do what it's meant to. Obviously there are plenty of brands that over exaggerate or have claims they cant back up etc, but certain things are fairly proven for certain things, and containing oranges would really just be a vitamin c serum i would imagine. Obviously they also put a much higher price tag for it and some definitely arent worth that price tag, but that's capitalism. But saying that i would rather put oranges on my skin is less bioavailable than whatever has been formulated for your skin. (Also some things dont penetrate past the top layer, others do, depends on what they actually want it to do).
I'm like 98% sure I have EDS but I live in the US so I can't get diagnosed because it'll make it so much harder for me to get health insurance when I'm older.
Hypermobile EDS has ruined my life.
EDS does have DNA tests, for every type except hypermobile.
Oh my brother and my friend have hypermobility, will have to ask if his skin’s stretchy. Brother can stick his leg behind his head lmao
Also, I’d be curious to know if this is the same for other peeps with chronic illnesses? I have fibromyalgia and yet I can only have one course of physical therapy covered. Since it’s one of the only known things to definitely have a positive impact for most people with fibro, it feels so strange for this to be the case. (I know it’s because of $, but still.)
I have EDS
i've genuinely got the least stretchy skin in the world lmao i think it has smth to do w nationality too (i'm oriental)
My brothers have marphans syndrome. And all ginger's
I have bipola2
Then gastoparal
Marfans
And gastroparesis
Well the fun thing is that people with ADHD are more likely to have EDS. So maybe is you have ADHD, it might be interesting to look up the diagnostic criteria for EDS. It turns out the brain also has a lot of connective tissue. Who would have guessed?
I have EDS 👍
very hypermobile lmao
The biggest thing is, if your symptoms arent debilitating then it is not EDS.
That is not true.
“EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.”
www.nhs.uk/conditions/ehlers-danlos-syndromes/
@@SciGuys in reality though doctors wouldn't diagnose without the symptoms effecting your life, such as painful dislocations and extreme fatigue. That's what I was told by EDS Canada when I was diagnosed.
I spend 6 month a year in bed and im on morphine
I have double jointed thumbs, knees and hips. I’m normal.
I'm normal too. I'm also autistic and experience joint pain in tandem with my hypermobility.
Normal is either just another way of saying "I'm ableist" or another word for "human". If I were you, I'd learn to accept the latter being far more varied than the narrow idea of normalcy being the lack of illness.
Ooof, I wrote this a year ago and see how it sounds now. My apologies! I imagine I was trying to express that my oddities didn’t make me uncommon in a smartass way. I am also neurodivergent and totally agree normal is now a bit offensive when used comparatively. So let me rephrase and say I am human, unique and learning. Thanks for calling me out! ❤ @@audreydoyle5268
Hypermobility
I have hEDS.
"A non-intersex cis gendered man" there we go lol
As someone with vascular EDS. Life sucks