hello! welcome to my carrd about ehlers-danlos syndrome type 3 :)

i made this carrd to better educate people about ehlers-danlos syndrome since not many people know a lot about it :) this is about EDS type 3, specifically, since this is what i have, not any of the other forms of EDS

first off, here are some frequently asked questions about ehlers-danlos & some background information about EDS ! :) i know this is a lot of info at once :o sorry about that :P

what even is ehlers-danlos?
ehlers-danlos syndrome (EDS for short) is a genetic disease that affects mainly joints and connective tissues, but can affect every system in your body. EDS causes a person's body to make too much collagen, which is the thing that makes you flexible and able to move. since our bodies make too much collagen, our joints and connective tissues are extremely loose, which cause frequent dislocations and severe joint pain (and many other things, but ill talk about that later)

is EDS curable?
as of right now, no, it is not curable. there are things you can do to help manage the pain, but this disability is lifelong. in some cases, EDS gets better as you get older, but it will always be there.

how common is EDS?
hypermobile ehlers-danlos (aka hEDS for short) is considered a rare disease, and about 1 in every 5,000-20,000 people worldwide have hEDS.





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doesn't this all just mean you're double-jointed?
no! while people who have EDS type 3 are extremely flexible and considered double-jointed, there's much more than that. (stated in next question)!


what are some of the symptoms of EDS, other than hypermobility?
some of the most common symptoms are "loose" joints, frequent dislocations, constant joint pain, extreme fatigue, digestive problems, easy bruising, and stretchy skin. in order to be diagnosed with EDS, you must meet a certain amount of criteria in order to be considered to be diagnosed.

how is this a disability if you look healthy?
remember, not every disability is visible! just because someone with EDS seems perfectly fine and healthy, doesn't mean they aren't in pain, and it definitely doesn't mean they're "cured"!

how do you get EDS?
EDS is a genetic disease, meaning someone in your family must carry the gene in order for you to be diagnosed or there must be a genetic mutation for you to have it. however, we still arent completely sure how the genes that carry EDS are formed. you cannot get it from a sickness, you cannot "catch it" from someone, and you cant develop it over time. you are born with it.

one of the biggest things about getting diagnosed with EDS is having someone advocate for you! unfortunately, for a lot of people, getting diagnosed is extremely complicated because of how uninformed people are. some doctors have never even heard of EDS, therefore leading to misdiagnosis. it takes a lot of people years and years to finally get diagnosed properly, just due to people being uneducated.

if you genuinely think you have EDS, you have to start out with an appointment with your primary doctor. they can write a referral to see a rheumatologist. then from there, they will decide if you need to go further into EDS testing and will send you to a geneticist, which is who can actually get you tested and diagnosed with EDS. remember though, it is difficult getting diagnosed and there will be lots of doctor's appointments and lots of different doctors you'll have to go to!

more common symptoms!
-joint hypermobility
-join pain + joints that crack a lot
-extreme fatigue
-skin that bruises easily
-skin that scars easily
-stretchy skin + extremely soft, velvety skin
-skin takes a long time to heal
-hernias
-dizziness after standing up
-dehydration

some more uncommon symptoms!
-having cold hands/feet, but a warm body at the same time
-high arched palate (basically the roof of your mouth is high up)
-benign (non-cancerous) tumors
-hair loss
-being extremely cold or extremely hot
-heart problems
-retina detachment
-digestive problems (digest too slow or too fast, paralyzed stomach, paralyzed intestines, etc)
-hearing and eye problems

some things you shouldn't say to someone with EDS!!!

-"you don't look disabled!"

-"if you're walking around and able to go places then it cant be thatttt bad!"

-"you're just looking for attention. there's no way you can get hurt that much!"

-"doesn't that mean you're just double-jointed?"

-"you look healthy though! you cant be disabled!"

-basically anything along those lines

just remember, it's perfectly okay to have questions!! i understand EDS isn't talked about too much, so you may have a lot of questions and things you wanna know, please just be respectful when asking! :)

a lot of people who have EDS also have postural orthostatic tachycardia syndrome (or POTS for short). POTS is basically a condition that affects blood flow to your body. it's when you stand up after you have been sitting down, the blood rushes to your feet, and so your heart has to work overtime to get the blood back up to your head. when you stand up, you feel lightheaded, dizzy, your eyes often go black, and a lot of people pass out. POTS is actually a pretty common thing, with more than 200,000 u.s cases per year.

-someone who has EDS type 3 may possibly have some part of their body in a brace or wrap pretty often. this isn't because they are faking it for attention!!! we have unstable joints that can dislocate at any second, so the braces are meant to keep that joint stable! i promise you its not for attention.
-may is EDS awareness month!
-the zebra is the official mascot for EDS ^__^
-many people with EDS use walking aids (cane, smart crutch, wheelchair, etc) to help get around
-every day is different for someone with EDS! one day someone may be at a 5/10 pain level, and the next day they could be at a 10/10 pain level! there’s no way of knowing