#then people who experience eds AND gynecological disorders will likely be the ones who apply for it

[torchickentacos]

oh my god i am so crampy that i cannot move right now so fuck it. ag watch through is happening. will be tagging it with #ag watchthrough if anyone wants to mute that. one post with all my thoughts per episode .I did this once before but couldn't commit, but I'll try again. I need something to focus on right now, but not something I need to THINK about and this feels like a compromise. The goal will be one episode a day, counting queueing posts. Will I regret this a third of the way through season one? probably but so it goes.

[cuntess-carmilla]

Common traits of Ehlers-Danlos Syndrome

I’m not a doctor, so there may be some details off here though tbh chronically ill people usually know more than most doctors. I'm making this post because there’s very little awareness about this, and people who fit the diagnosis criteria end up never being diagnosed and suffering in silence, even risking early deaths, as I now suspect happened to my grandma.

Definition:

Ehlers-Danlos Syndrome (EDS) is a group of disorders that affect connective tissue. It’s a genetic disorder that has no cure, but does have palliative treatments depending on the type of EDS.

All types of EDS are characterized by abnormal collagen synthesis. This doesn’t mean that you have too little collagen (necessarily?), but that the collagen your body synthesizes is and will always be altered or of bad quality, regardless of how much of it you synthesize.

EDS is regarded as “rare” by most doctors, but many patients believe it’s more common than they think, only being so “rare” on paper because doctors perceive it as rare, so they don’t diagnose patients despite fitting the criteria (search why EDS communities use the zebra as a symbol). Due to this, EDS communities encourage self-diagnosis, and many times even self-treatment.

Abnormal collagen sounds like it’s “only” one thing, but collagen is a key structural protein ALL over the body, so if your collagen is wrong, a lot of things are wrong or at the very least unusual. As a result, EDS affects the skin, ligaments, joints, blood vessels and other organs (including gastrointestinal organs and the uterus).

Common traits and symptoms:

Please, keep in mind that these symptoms don’t have to be super extreme to count. EDS symptoms range from mild to severe. Most of my symptoms aren’t remarkably visible to the eye, but they’re still bad enough that I suffer tremendously and it affects every single aspect of my life.

Take into account that many of the following traits/symptoms aren’t exclusive to EDS, but if you have more than one or two...

Joint hypermobility: Being "double jointed". The joints are so lax, that they luxate or even dislocate for as much as staying still in the same position too long. It can affect some joints, or all joints, small joints or big joints. It obviously comes associated with joint pain, including chronic joint pain. Can also manifest as scoliosis.

Skin elasticity: You can pull your skin (by pinching it) and it stretches more than the skin of most people. This can, in some cases, make EDS patients prone to skin sagging.

Abnormal scarring: The skin of people with EDS is fragile and elastic, and takes longer to heal. Abnormal scarring includes “cigarette paper” scarring, keloids, slow scarring and healing, higher propensity to stretch marks, post-inflammatory hyper-pigmentation.

Bruising too easily: The blood vessels of people with EDS are fragile to one degree or another. This makes us prone to bruising easily or dramatically, to the point some present spontaneous bruising. Spontaneous bruising might point to vascular EDS, in which case please seek medical help because it’s the most dangerous form of EDS. There’s cases recorded of parents who’ve been falsely accused of beating their children because of the child’s easy or spontaneous bruising.

Digestive and/or nutritional issues: GUESS what intestines and other digestive organs are made of. Yes, collagen. People with EDS are prone to having delicate digestive systems (IBS, nausea, constipation, diarreah and food allergies included), and/or difficulty absorbing the nutrients from our diet. This trait can be bad enough that the patient needs to be fed through a tube or have nutrients injected into their bloodstream, but most of us do fine with regular nutritional supplements (I recommend multivitamins and minerals). Among other things, the nutrient absorption issue makes us prone to excessive hydration due to imbalance of water-salt intake or absorption, and that’s a REALLY bad thing. It made my hair fall off MASSIVELY for years, and intensified my pain, brain fog and fatigue.

Chronic fatigue: Between the physical pain and bad nutrient absorption, most if not all of us experience chronic fatigue (as a symptom, not the disorder). This isn’t just being tired, it’s being exhausted to your bones for no reason all the time, even if you’ve done absolutely nothing in weeks. Might be pervasive, might be recurrent.

Muscle pain: When you have EDS Everything Hurts™. This can be exacerbated in EDS patients by imbalance of water-salt intake (generally leaning towards excessive hydration, but can be dehydration too).

Chronic pain: Everything Hurts™... All the time. It’s a general pain expanded throughout your body that just won’t go the fuck away no matter what you do. Except that this can be exacerbated by imbalance of water-salt intake too! Fixing mine made my chronic and muscle pain so much more bearable to the point that on a good day it’s GONE (just remember, your pee should NEVER be even close to clear, it should just not be solidly opaque, and you could damage your kidneys too by drinking too much water).

Brain fog: Linked to chronic fatigue and pain (ALSO POSSIBLY THE WATER-SALT INTAKE). Like chronic pain and fatigue, it’s not necessarily present every single day, but be recurrent instead. You can’t think. You can’t read or process what you read. You can’t turn thoughts into words. Your grammar goes to shit. You can’t retain or process new information. You can’t remember words that you KNOW you know. You can’t remember things in general. Someone asks you a simple question and it’s like they’re speaking to you in another language. You start to feel increasingly frustrated and desperate because you’re constantly disoriented and your mind is lagging like an old computer running on a 256 MB RAM memory. ERROR 404 BRAIN NOT FOUND TRY AGAIN LATER. Well, turns out you are not dumb, your body is not cooperating with you, and that includes your brain.

Asthma: Highly comorbid. Just... Everything is made of collagen, pal. EVERYTHING.

Autism: Don’t ask me why, but EDS and autism are highly comorbid too, so if you’re in the autism spectrum (same hat) and experience any or many of the other symptoms/traits listed, it’s very likely that you also have EDS.

Depression: It’s really hard to be "positive”, have any motivation or enjoy anything, when NOTHING in your body works right, Everything Hurts™ and you’re so depressingly exhausted that all you CAN do is lay in bed all day. People and doctors telling you you’re “faking it”, people thinking you’re lazy, underestimating how much pain and fatigue you’re going through, having to pull through all of that anyway because you have no other option (ie. your job is your or your family’s only source of income) does not help AT ALL with this.

Tight/narrow “inner plumbing”: In my case, my throat is so narrow, that swallowing one (1) small pill is genuinely difficult, and big pills make me GAG. But its not just your throat, it’s ALL your plumbing being too tight or narrow.

Varicose veins: The whole blood vessels being fragile thing. Most common in vascular EDS, please seek help if you think you may have that specific type.

Thin “transparent” soft skin: Again... FUCKING COLLAGEN. I think it’s obvious what this one means? Except it’s likely that it’s harder to notice the “transparent” part of it on darker skinned patients, but if you’re pale or light skinned, you’d be one of those people whose veins are very easy to see.

“Moldable” nails: Yet again, collagen is everywhere. Some of my nails (index and middle fingers) are slightly deformed because I tend to clench my hands A LOT by instinct and the continued pressure changed their shape.

Aracnodactilia, or “spidery” hands/fingers: The fingers are very skinny and long in proportion to the rest of the hand, can apply to feet too. Having very narrow feet (ie. your shoes are always to wide for you) is part of this.

Gynecological issues or abnormalities: Excessive bleeding during your period, bleeding outside your period, infertility, spontaneous abortions, pre-term labor, high risk pregnancies. Very common with vascular EDS too.

Dry eyes: I didn’t know about this one until like, literally two days ago but apparently it’s a thing, since the test this Chilean EDS specialist we’re hoping to see gives you, includes it as a potential symptom.

“Elongated” body, face (and its features) and/or limbs: Actually the aracnodactilia is often part of this. I also have no idea why but many EDS patients have “elongated”, narrower features, be it subtle or very visible.

Chronic fatigue and brain fog are really hard to describe properly to people who don’t go through them. Hell, even to people who DO go through them. So here’s two videos by Jessica Kellgren-Fozard (just in case, she was misdiagnosed with Chronic Fatigue Syndrome, but discovered recently that she has EDS, besides her neurological condition). All her videos have CC.