The Science of Ehlers-Danlos Syndrome | Sci Guys Podcast #188

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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[laurenmansell]

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! 💜

[ChronicGoblinQueen]

So grateful to you for highlighting this condition, it's often so misunderstood, if it's even acknowledged. 🦓

[aviva]

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

[georgiekelly]

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😂

[wryn.is.trying]

oooh i’m excited for this one!!! I have EDS and it’s always nice to see people accurately discussing it.

[binchmcdaddy]

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)

[k_akaedgar_]

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

[quinns]

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 .💜

[EBerryMc]

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.

[thiel_spencer]

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 YouTube if you're interested in seeing someone with EDS talk about it! I immediately thought of him when I saw the title.

[lavendermerritt]

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)

[tigergutt]

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

[Struudeli]

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.

[joncookiepants]

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.

[peterjf]

About thirty years ago a friend with EDS died from a collapsed heart valve. He was 33.

[LookinGoodAnya]

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 😫

[lorenam]

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".

[AngDevigne]

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.

[kayleigh]

EDS person here! Thankfully, I was diagnosed really young. Chronic pain and fatigue are my main issues.

[jeremyfisher]

Its really cool when I can pop my shoulder out of the socket when I intend to, not so much while im lifting weights 😬