Thread by @WeftOfSoul, So I've been thinking about this cluster of features in a person. [...]

So I've been thinking about this cluster of features in a person. Small thread.

( @nosilverv @jack_meditates ) https://twitter.com/WeftOfSoul/status/1290136567680401409

https://twitter.com/WeftOfSoul/status/1290136567680401409

I've got Ehlers-Danlos Syndrome, which is a hereditary dominant mutation that causes my soft tissues to be kinda fucked up, mostly because of odd collagen. I was only diagnosed between ages 21-23 thought it always caused intense trouble. Most know it as "being double-jointed"

I had doctors try to diagnose me as arthritic before one made an offhand comment about hypermobility, and my own research brought me to EDS, which was a perfect match. Bendy, lax skin, pains and aches, dislocations, easy bruising. A very classic hypermobile type EDS case.

In my research though I found way more than just "oh this is why my myscles hurt." No. EDS goes way deeper. It affects ALL soft tissue. Eyeballs, nerves, brains, guts. Endocrine system. Immunity. I became a bit of an expert in it, because my doctors never knew about EDS at all.

EDS is dominantly hereditary. If you have it, one of your parents must have given it to you. It doesn't stay recessive.

When I was diagnosed, in addition to the check list criteria (I got 7/9) they needed to find a relative with the symptoms to confirm.

I took my check list home and asked my parents. Hmm. They both score more than 5. I check my 3 siblings. Yup high scores. Sooooo. Which parent is it? There's only like 300 cases in Finland, can't be BOTH, this is RARE. Let's check THEIR parents and siblings.

Uh.

We chart it out: Mom's mom seems to have it. Out of her 12 kids over half have the symptoms. Dad's dad's mysterious death by ruptured heart is explained by this too. Dad's five siblings all show symptoms.

We check with my cousins from the affected aunts and uncles. Big numbers.

Our family adds a few dozen EDS cases to the statistics in one fell swoop. Mom and dad get into looking into family trees and find a common great great grandmother or somesuch, a likely source of this family tree decorated with EDS like christmas ornaments

It's not just the EDS though. Many of mom's 11 siblings have similarly large families, and my dad's siblings all have several kids. A large pool of weird sickly people to study. Everyone's not some kinda autoimmune problem, endocrine issues, neuroatypical diagnoses.

So I compile a list of the metasyndrome of syndromes and diagnoses. Here's the list of EXTREMELY CONNECTED things:

Hypermobility/Ehlers-Danlos Syndrome
Autoimmune disorders
Endocrine system (PCOS, thyroid etc) issues (+PCOS very common amongst transmen)
Malfunctioning of the autonomic nervous system (PoTS)
Neuropathy
Gut issues
Gender dysphoria
Chronic fatigue
Sleep disorders

Psychosis
Schizophrenia
Mast cell activation disorder
Sensory problems
Proprioception issues
Anxiety, depression
Bipolar
OCD
ADHD
Allergies
Eating disorders

These I can find scientific evidence for, but I'd also like to add high openness to experience (big 5 personality trait), high neuroticism, any queer identity, high IQ.

To me it's like, "Ah yes it's all the same thing" and whenever I meet a person who knows they've got one, or they obviously display one trait, I start checking for which other patterns clearly match.

I try to not diagnose friends without them expressing issues or frustrations FIRST, don't want to feed any hypochondriacs any more than necessary (yes that's also very common in this cluster.) But I definitely have some people I've been itching to tell about Clusterfuck Syndrome

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