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
various tests and told me that my arm span is longer than my height which may
be the most exciting thing anyone has ever told me about my body once that was
done she diagnosed me then and there - Mobile EDS with marfanoid phenotype and
I shall make no video that actually explains what that means I just wanted
to use this one to share that I've noticed a marked change since getting
that diagnosis a few weeks later I went to the GP 12
referral to physiotherapy of my job again and yes it was a different doctor
but the change was pretty extreme he listened he took everything I said
seriously convey that he was aware of my condition how it works and what it means
offered me to help I asked for MC TD effects between one and nine people in
every hundred thousand depending on the ethnicity EDS affects at least one in
5000 people globally hopefully this new diagnosis means it's going to be easier
for me to access the help I need if you see my mobility aid Hunt videos you'll
know that I've been trying to find that mobility aid without the help of a
professional because I just didn't have access to that I love the NHS but if
you're slightly out of the ordinary it's very difficult to access but I'm really
hoping that my new mobility aids can turn a corner for me and make dealing
with my body a little easier I should see you in my next video where we can
unbox my new aid together
you