(Music Plays) hey guys happy eds Awareness Month Ican't believe it's come around quite so quickly again I'm chronically Jenni if you're new here and this is my fourth annualset of EDS Awareness Month videos so I'm very pleased to be bringing them backthis year for a year that's hopefully gonna be bigger and better than everI am bringing you people from across the world with all different types of ElhersDanlos syndromes and hypermobile spectrum disorder so you can get to knowa little bit more about what it's like to live with these conditions Hi my name is Iga.
I'm Jeannie di Bon.
My Name is Izzy Kornblau.
My Name is laura my name is Catalinahi my name's Bradley Jones also known as veds_zebra on instagramHi my name is Alexis.
Hi my name is Desiree Schwartz I'm Gemma.
Hi I'm Becca Vacha.
Hi everyone I'm Hailey.
My name is Sydney.
Hi my name is Jayme.
Hi my name is Jelly.
hi my name is Jess.
Hi my name's Amy.
hi I'm Chloe hi my name is Hi, my name is Kim.
my name is Leslie.
hi my name isMaddie.
My name is Natasha.
Hi My name is Raquel.
My name is Rebecca.
My name is Suzanne.
Hi I'm Meg.
Hi My name is Taylor Thompson.
Hi my name's Jenni I'm from Essex in the UK.
I'm from Alberta CanadaI come from Australia I'm from Chile I am from Ohio.
I'm from Poland.
New York City.
and I'mfrom London.
I live in Switzerland I'm from Ireland.
I'm from Portugal.
and I live in Aberdeen inScotland and I have hypermobile Ehlers Danlos syndrome.
I have the classical type of Ehlers Danlos Syndrome The subtype of EDS that I have is called vascular ehlers danlos syndrome The Ehlers Danlos Syndromes are a group of connective tissue disorders which vary in how theyaffect the body but they're generally categorized by joint hypermobilityskin hyper extensibility which basically meansstretchiness and fragile tissue which can occur anywhere in the body.
there arecurrently 13 types of ehlers-danlos syndrome as well as hypermobilityspectrum disorder.
I could reel off thousands of definitions of thedifferent types and we'll get to talking about some of the rarer types later inthis series but I really wanted you to hear not a dictionary description ofehlers-danlos syndrome I wanted you to hear how it affects people on a day today basis Ehlers Danlos syndrome is.
.
.
unrelentingpain.
pain.
painful.
having painful dislocations or partial dislocationsthat are also known as subluxing constant pain constant exhaustion.
fatigue like crazy.
it's tiring.
I don't and fatigue that seems like I'm going to pass out but I don't and honestly at that point sometimes I justfeel that it would be so much easier if the body shut down because it's souncomfortable and distressing debilitating.
nausea.
gastric difficulties.
nausea and vomiting I am most severely affected GI wise.
Digestive tractdysfunction most of my digestive tract from the moment you eat food to themoment it exits your body just does not work properly.
Chronic migraines.
fragility.
and instability.
stretch marks the intermittent and unpredictable symptoms one day I'm fine the next day I'm not mobility issues.
if you need a mobility aid at a young agepeople are really judgmental somedays walking across my house seems impossiblebecause of pain or dislocating or fatigue or just flare-ups in general jointinstabilities dysautonomia and anxiety central lines.
uncomfortable.
fainting.
Mouth stuff so like high palate, tongue tie crowded mouth, crowded mouth yeah.
joint pain, dysautonomia intolerance to medication chronic dehydration.
isolation.
mental strain of being chronically ill it's a lot to handle sometimes andhaving many other illnesses getting injured.
hospitalizations.
EDS is painful upsetting demanding restricting andscary it is such a complex disorder that's so few even doctors fullyunderstand.
challenging misunderstood.
it's frustrating.
uncertain.
under-diagnosed.
invisible.
it's not just being bendy scary.
confusing.
unpredictable.
Unpredictability of the location of the pain, the intensity of it, feeling unwell and other symptoms that come and go Ehlers Danlos to me is dislocations fatigue walking intoeverything mainly doorframes occasional desks err brain fog and pain but also strength definitely strength strength resilience and hope.
butmost importantly resilience I suppose pain and instability and and gastroproblems but also um you know the fact that it's taught me resilience and givenopportunities that otherwise wouldn't have arisen resilience despitedifficulties I know I want to live a life with functionality so I always tryto be aware of my limits and live right in that edge to make the most ofeverything that life can give me eye opening and life changing.
community adaptability when my body really can't give me more I have to be creative infinding new solutions to make my tasks easier family I am Zebra strong I am Zebra strong.
and I'm zebra strong and I am Zebra strong and I am zebra strong I am zebra strong I am zebra strong and I am Zebra strong I am Zebra strong thank you so much forwatching the first video in this year's EDS Awareness Month videos series I hopeyou will continue to watch the rest and hopefully learn a little bit more aboutehlers-danlos syndromes along the way if you've liked this videoplease give it a thumbs up and if you haven't already I would love it if you'dhit subscribe we will see you next week for another video (Music plays).
