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  • hello lovely people!

  • So... some of you may, from the title of this video,

  • know exactly what it's about

  • in fact a couple of you already guessed on my Instagram

  • when I teased that this video is going to be made

  • so!

  • but for everyone else:

  • surprise!

  • I was misdiagnosed!

  • If you're new here: hi, I'm Jessica,

  • I make positive educational and amusing videos

  • twice a week about disability, chronic illness,

  • gayness and vintage-style

  • because I'm layered that way.

  • all humans are a spectrum of interests

  • subscribe if you enjoy painful life lessons packaged in happy ways

  • with some vintage sass

  • So, let's start at the beginning.

  • so I was born a bit off

  • slightly wrong this baby isn't quite like the other ones doing this

  • doesn't normally hurt babies but this one seems to be really crying about it

  • so let me continue this poking and maybe we'll find out why I was a little bit

  • too delicate I look a bit too floppy a little bit too slow and then after that

  • area is just too fast I spent my entire childhood either ill or injured and

  • accused of faking it 90% of the time I was known of my two signature

  • accessories an ALICE band and a tube bandage my mother was forever being

  • called into my nursery or my primary school because Jessica injured herself

  • again one of my most powerful memories is being dragged as a three-year-old

  • from room to room above our nursery by my friend and she had both of her hands

  • on my forearm and I remember looking up at her face and thinking what jolly

  • furniture was and feeling the bumpy play mats under my belly and then suddenly

  • the kind of pain that makes you no longer human

  • my entire freakin arm was hanging off just flopping around from a bit of skin

  • and it hot like you wouldn't believe and I couldn't even breathe because it

  • was just stabbing myself harder with every breath like a knife being pushed

  • between every single rib they called my mother who came and picked me up and

  • then had to take me to hospital herself I remember being in such pain that I was

  • mentally sat in a little room in my head was my animal instincts took over in my

  • entire body and I just I'm really screamed I probably would have bit

  • someone if they'd let their hand get too close according to my mother it took a

  • very long time before someone found his senior doctor but

  • to casually Swan over and just shove my arm back into place and that was in the

  • last time no no it happened more often than we could remember so my mother

  • developed a system for checking whether my arm is dislocated or just injured she

  • gave me a chocolate button which I would grab with my good arm and then before I

  • had time to eat it would offer me another one if my arm was just injured

  • I'd reach out with the bad arm and if it was dislocated I try but failed to lift

  • it and then cry loss there was a lot of crying I would say anything involving

  • bouncing because my ankles are essentially jelly trampolines her fun

  • until they snap your ankles not a big fan of rough-and-tumble also involved

  • many injuries Camille will just take a moment to recognize her spirit slapping

  • Lieb oranges to be injured I mean just wow some pouring why do adults think the

  • children faked injuries it is the least fun thing in the world I was a very

  • dramatic teenager and I had this well if I got hit by a car and broke my leg

  • everyone would show me intense love and realize how great I am thoughts but then

  • I accidentally paralyzed both my arms and I love stirs with my friends it was

  • very very boring Plus slide I did have some great party tricks to go seduced

  • occations because apparently most people can't do this and no fingers do have

  • been back like this and they can't fold themselves up into a kitchen cupboard

  • when playing hide and seek madness I may have been terrible at gym classes but I

  • was excellent when it came to warming up stretches that counts for something

  • right I mean I should get a medal

  • my general floppiness kind of flew under the radar when it came to my health

  • because I had a lot of other things that were wrong with me I was exhausted a

  • terrible digestion fell over constantly got dizzy just from standing up was in

  • constant pain all of the time had terrible migraines my extremities roar

  • is going numb and I feel the cold like someone is actually peeling my skin off

  • oh and I bruise like a peach i bruise dry so much as looked at the

  • aforementioned trampoline I didn't even have to get close to a trampoline I just

  • had to be in the general area watching other kids having fun on the trampoline

  • and my body would just become one massive bruise have I mentioned

  • trampolines enough are you getting that I would love a trampoline to jump up and

  • down on preferably with some kind of safety mechanism to protect my feet

  • little ankles anyway I'm actually finding this video really

  • hard to make and talk about and

  • sometimes I cover difficult stuff by being amusing probably gonna cry now

  • which feels like a very silly response to the fact that I was just joking about

  • trampolines but I always envied those kids who got to do gymnastics or play

  • sports or go on a bloody trampoline I've just been weak all my life and I can't

  • hate it I cannot allow myself to be unhappy with it

  • because then what what then this is my body and this will always be my body and

  • I can't allow myself to be annoyed because that clearly serves no purpose

  • but sometimes I guess being annoyed is the right thing to do anyway i paralyzed

  • both my arms for a year and a half when I was 17 and you probably heard this

  • story before and if you haven't desert card above with a video that explains

  • that happened and when they finally wrote to have what was wrong with me I

  • was diagnosed with something called hereditary neuropathy with liability

  • pressure palsies that was worked out by a blood test don't know I had to do that

  • I'm missing a gene my dad is too case closed right except it didn't

  • explain all of my symptoms because it didn't explain my hearing problems or I

  • floppiness or my dislocation or anything except the numb fingers and completely

  • inappropriate response to touch stimuli by which I mean feeling cold air as if

  • I'm being flayed and feeling cold water as if I'm on fire oh and the thing where

  • I paralyzed this myself I always forget that people's bodies

  • don't do that at the time the doctors mention something about mobility but

  • didn't really register because they use the term as an adjective not as the

  • actual name of a diagnosable condition so in my head I just chalked up

  • everything listened to my hat to the genetic condition I knew I had hm PP

  • which was also really helped by the fact that I turned 18 and suddenly I didn't

  • have a consultant doctor anymore because health systems great when you're a child

  • but once you become an adult it's the Wild West for five years I mainly just

  • went to my GP with complex and baffling things oh hey I've got pneumonia again

  • oh hi I had a migraine poor chap tried to work out but really shouldn't have

  • had to I did chnpp consultant once or twice but she literally did not care

  • about any of my symptoms that didn't fall under her remit and accuse me of

  • faking them Oh cuz again faking stuff clearly so fun I should out here having

  • hyper contra or psychosomatic illnesses is not the same thing as faking it no do

  • not relate not the case even if other people tell you sir so I wandered for

  • five years in no-man's land no help with unexplained symptoms that I really

  • disliked my body for having five years seven years feeling like I had maybe

  • because apparently there was just no reason to have them they made no sense

  • but then I met Claudia a loose month with

  • ever see you I left the up string of every story I

  • have is and then I met my wife she really does make everything better

  • she's very pushy she signed me up to a new hm pp consultant who is the bee's

  • knees and from there me learnt that although I had a lot of symptoms that

  • weren't under the HM ppm brother they probably did have something to do with

  • Rheumatology which she then referred me to brainwave so she referred me to

  • consultant rheumatologist who explained but hypermobility

  • wasn't just a way to talk about sloppiness but was actually a thing it's

  • a thing to speak on brother of things but it's the thing mixed connective

  • tissue disorder he said mixed connective tissue disorder also known as mixed

  • connective tissue disease is an uncommon systemic inflammatory rheumatic disease

  • it's an overlap syndrome a term used to describe when a patient has symptoms of

  • more than one classic inflammatory romantic disease to be diagnosed with n

  • c td you must have rheumatic symptoms plus anti RNP antibodies it's a little

  • bit like saying you have something I just don't know one yet by the way I

  • looked out auntie RNP antibodies and Google told me auntie RNP antibodies are

  • directed against you one particle of an extractable nuclear antigen named right

  • clue new blue protein protein it's on the screen which is apparently made out

  • of a complex of proteins and a small nuclear RNA mooned you well done if you

  • know what that means the initial symptoms of M CTD are

  • generally unspecific consisting of general malaise arthralgias myalgias and

  • fever and it should then take around three and a half years from the first

  • manifestations until almost every organ is affected with patients that meet the

  • full criteria of em CGD arthritis is the most common symptom with Renard's

  • swollen hands lymphopenia and heartburn following in descending order em CGD

  • made sense of a lot my symptoms my pain when it's called

  • blue fingers when I'm stressed pain and information in my joints information and

  • pain and in sun-exposed areas of skin I hate the Sun weirdly I know muscle

  • weakness and swelling swallowing problems difficulty breathing weird

  • heart thing fatigue of course there are some things that just didn't make any

  • sense and that I don't have but a lot of it made sense and I understood what was

  • going on I liked that it had a name I made a video called my disabilities HMP

  • P and M CTD that explained more but my eyebrows are terrible it didn't exactly

  • fit alright I had these symptoms for more than three

  • and a half years but one thing I don't have skin abnormalities other than

  • breathing raggedly I injured myself in a way that would cause scars but they're

  • not noticeably terrible just the one under my chin I also don't have Raynard

  • syndrome which is the key indicator of M CTD that's where the blood completely

  • leaves the tissue leaving your fingers white or yellow as response to even a

  • tiny bit of cold or stress which funnily enough my wife does have it and even has

  • to wear special gloves and start with metal in as it gets colder there's

  • actually there anything wrong with her I'm using to me anyway I have a whole

  • video about it it's there but the point is that it didn't really explain all of

  • my symptoms and again it didn't quite match and then I met some amazing

  • friends Jeremy and Candis who had a chiropractic clinic in Southwick England

  • allied chiropractic highly recommend and they pointed out my body type perfectly

  • fits another condition that sometimes people leave comments in my videos

  • saying hey are you sure you don't have this about and then I looked it up yeah

  • sounds like Ellis tan loss syndrome comes up cuz you saw that one coming at

  • me not me Emma's dad must endure more EDS is also

  • a connective tissue disorder and occurs due to variations of more than 19

  • different genes with a specific gene affected determining the type of EDS

  • typically these results in defects in the structure of processing of the

  • protein collagen and yes that is the thing that they make face

  • that's about it's why some people with ETS look much younger than they are and

  • some people look odd the thing is from my experience not many people in the

  • medical profession really know what MC TD is it's really gonna struggle getting

  • help for it and I feel as if I've been pushed from tenor to post and try to get

  • help from the physiotherapy service but things like my jaw dislocations when she

  • getting much worse than now for a week before my period I found my jurors so

  • loose on the left side but it partially dislocated during the night and then I

  • struggle to eat or talk and you don't really see that because I don't exactly

  • make videos when I can't talk but it's really been quite difficult EDS male

  • hand is a known quantity and whilst it might seem like I am actually saying

  • that I don't the popular kids have what I'm actually saying is I want to receive

  • adequate medical care for the symptoms I have and I want to know what's wrong

  • with me so I have the tools to manage it so I ask my GP primary care physician to

  • refer me back to Rheumatology in order to get reassessed particularly important

  • as the diagnostic criteria for EDS has changed I was diagnosed with MC TD and

  • they may have diagnosed me with it when they saw me the first time had that been

  • the case then and he said no because why it's not curable there isn't any point

  • in referring you and Rheumatology are very busy right now treating people with

  • things like rheumatoid arthritis they won't want to see you but I mean like a

  • doctor handing a parent baby and going it's dying not gonna tell you what they

  • can fun figuring that out by yourself what does the ability to cure something

  • have to do with giving someone the medical help they need for goodness sake

  • and that was a month ago and it really cut out my little heart the same doctor

  • in the same conversation also told me he refused to support me getting my

  • eyebrows microphages and I'm not sure why I focused on that

  • but I really did because I really want to have proper eyebrows

  • you can't tell I'd actually have real eyebrows I draw them on they're

  • naturally a centimeter long sad falling out a few years ago I'm not saying that

  • being read iagnosed in quite a big way eyebrows are on the same level but it

  • definitely felt like it at the time and I just want to know everything I can

  • about my body and I want that body to have eyebrows anyway

  • I tweeted about it the outset and then someone wrote underneath I've been

  • trying to find a doctor who will diagnose what I think is EVs and then

  • someone else wrote back oh I saw an amazing doctor privately and she only

  • charged me 300 pounds and then I cried I've really occurred to me to go

  • privately but then that same poster tweeted the link to the doctor that

  • they'd used who by the way has a service that launched a book online and pay by

  • paypal because it's not the 1930 more and I made an appointment immediately I

  • don't find the original tweet now so I I can't thank you but please know that

  • you've made a really big difference to my life so I went to the fancy London

  • clinic and as soon as called and I walked in we both had the same oh this

  • is why people go private I knew we had a ridiculous amount of money reaction and

  • it was comfy and friendly and pretty didn't smell weird and everyone smiled

  • at me and none of the staff looks like they've been working through the legal

  • limit of hours without a break there was a little sign in the waiting room that

  • said we've heard patient feedback about the temperature of meals being served

  • all hot meals will now be served on preheated plates preheated planes plates

  • even I mean Jesus when I was in the gastro ward we didn't even have plates

  • they centrifuge on cardboard she's pretty indistinguishable from the

  • sandwiches and this is not me advocating for the privatisation of the NHS I could

  • not think of anything worse this is me advocating for the government doing

  • their job and allocating the NHS to resources they both need and deserve we

  • saw a lovely consultant who listened and took notes as I spoken ran through