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There are devastating gaps in knowledge about the debilitating effects of living with EDS<\/h2>

Hello and thank you for taking the time to learn more about Ehlers-Danlos Syndrome.<\/p>

This website has been launched to educate, but has been borne out of frustration that most people are still not aware of the debilitating effects of living with the rare condition Ehlers-Danlos Syndrome, and associated painful disorders.<\/p>

Sadly, that includes health professionals, benefit assessors and investigators, employers, teachers, legal experts... the list goes on and on...<\/p>

Many such professionals are still unaware that EDS is an invisible illness, and you cannot judge how much pain a person is suffering simply by looking at them.<\/p>

EDS sufferers mask chronic pain and fatigue, and more often than not they will suffer payback for completing simple activities, experiencing extreme pain hours or a day later.<\/p>

As shown in the image above, just because someone with EDS may seem to be 'fine', the reality is very different indeed.<\/p>

We are aware of gaps in professional knowledge in different areas of the UK, and this will be the case across the world.<\/p>

We are even aware of lifelong EDS sufferers being taken to court in the UK on suspicion of benefit fraud, simply due to a lack of understanding about the nature of EDS, and what living with the illness 'looks like'.<\/p>

So this website is here to hopefully increase understanding of EDS, and the constant, usually hidden, struggle of sufferers.<\/p>

Please read all the heartfelt quotes on this home page, which feature within the real life stories on this site. They come from people across the world, and their families, who suffer daily through the effects of EDS.<\/p>

Please also follow the links to relevant sections which will hopefully give you guidance, when working or living alongside these brave warriors. Thank you.<\/p>

If you're new to EDS, you may wonder why there are references to zebras across the website...<\/p>

EDS uses a zebra as a symbol to represent rare diseases, turning the medical adage 'When you hear hoofbeats, think horses, not zebras' on its head, because Ehlers-Danlos Syndrome (EDS) is a group of rare, often overlooked, conditions.<\/p>

The zebra's unique stripes also symbolise the distinctive, varied symptoms of each person with EDS\/HSD, who are often misunderstood and need specialised care.\u00a0<\/p>

Please also follow us on Facebook<\/u><\/strong><\/a><\/p>"},"textColor":{"id":116406445,"value":"#{feature.text.color}"}}}],"properties":{"icon":{"id":115650246,"value":null},"title":{"id":115650247,"value":null},"backgroundColor":{"id":115650249,"value":"#{feature.background.color}"},"padding":{"id":115650253,"value":"6"},"fullWidth":{"id":115650254,"value":"0"},"fullBackgroundColor":{"id":115650255,"value":"#{feature.fullBackground.color}"},"published":{"id":115650256,"value":"1"},"conditions":{"id":115650257,"value":"[]"},"direction":{"id":116406437,"value":"column"},"textColor":{"id":116406438,"value":"#{feature.text.color}"},"buttonText":{"id":116406439,"value":null},"copy":{"id":116406440,"value":"

There are devastating gaps in knowledge about the debilitating effects of living with EDS<\/h2>

Hello and thank you for taking the time to learn more about Ehlers-Danlos Syndrome.<\/p>

This website has been launched to educate, but has been borne out of frustration that most people are still not aware of the debilitating effects of living with the rare condition Ehlers-Danlos Syndrome, and associated painful disorders.<\/p>

Sadly, that includes health professionals, benefit assessors and investigators, employers, teachers, legal experts... the list goes on and on...<\/p>

Many such professionals are still unaware that EDS is an invisible illness, and you cannot judge how much pain a person is suffering simply by looking at them.<\/p>

EDS sufferers mask chronic pain and fatigue, and more often than not they will suffer payback for completing simple activities, experiencing extreme pain hours or a day later.<\/p>

As shown in the image above, just because someone with EDS may seem to be 'fine', the reality is very different indeed.<\/p>

We are aware of gaps in professional knowledge in different areas of the UK, and this will be the case across the world.<\/p>

We are even aware of lifelong EDS sufferers being taken to court in the UK on suspicion of benefit fraud, simply due to a lack of understanding about the nature of EDS, and what living with the illness 'looks like'.<\/p>

So this website is here to hopefully increase understanding of EDS, and the constant, usually hidden, struggle of sufferers.<\/p>

Please read all the heartfelt quotes on this home page, which feature within the real life stories on this site. They come from people across the world, and their families, who suffer daily through the effects of EDS.<\/p>

Please also follow the links to relevant sections which will hopefully give you guidance, when working or living alongside these brave warriors. Thank you.<\/p>

If you're new to EDS, you may wonder why there are references to zebras across the website...<\/p>

EDS uses a zebra as a symbol to represent rare diseases, turning the medical adage 'When you hear hoofbeats, think horses, not zebras' on its head, because Ehlers-Danlos Syndrome (EDS) is a group of rare, often overlooked, conditions.<\/p>

The zebra's unique stripes also symbolise the distinctive, varied symptoms of each person with EDS\/HSD, who are often misunderstood and need specialised care. <\/p>

Please also follow us on Facebook<\/u><\/strong><\/a><\/p>"},"template":{"id":116406441,"value":"feature"}}},{"id":4668177,"type":"row","published":1,"size":{"x":12,"y":0},"order":15,"items":[{"id":4680616,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005313,"value":"

\u201cI'll never be free from this. I get up every morning and I tell myself it's the only option I have, to push on regardless. <\/strong><\/p>

Some days I win that round, other days I lose, but that's just part of the fight.\u201d<\/strong><\/p>"},"textColor":{"id":116005314,"value":"#fff"},"onTop":{"id":116005315,"value":"1"}}}],"properties":{"fullWidth":{"id":115653720,"value":"0"},"padding":{"id":115653721,"value":"3"},"borderRadius":{"id":115653722,"value":"4px"},"directionOnMobile":{"id":115653723,"value":"top"},"directionOnDesktop":{"id":115653724,"value":"right"},"backgroundImage":{"id":115653725,"value":"https:\/\/images.podos.io\/lyyi6jistvecsjmzuxt9vtzoinlhk0kk9dvqhwcddhpsl86u.png.png?fy=0.372985877084578&v=2"},"backgroundColor":{"id":115653726,"value":"#000"},"overlayOpacity":{"id":115653727,"value":"1"},"ratio":{"id":115653728,"value":"short"},"fullBackgroundColor":{"id":115653730,"value":"#fff0"},"published":{"id":115653731,"value":"1"},"conditions":{"id":115653732,"value":"[]"},"align":{"id":116005311,"value":"center"},"template":{"id":116005312,"value":"testimonial"}}},{"id":4669419,"type":"row","published":1,"size":{"x":12,"y":0},"order":11,"items":[{"id":4680612,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005293,"value":"

\u201cI can't even describe how bad the pain\u00a0can be. I remember really pushing myself to come in to work, and I was\u00a0so proud of myself for driving an hour to get there.\"<\/strong><\/p>"},"textColor":{"id":116005294,"value":"#fff"},"onTop":{"id":116005295,"value":"1"}}}],"properties":{"fullWidth":{"id":115695932,"value":"0"},"padding":{"id":115695933,"value":"3"},"borderRadius":{"id":115695934,"value":"4px"},"directionOnMobile":{"id":115695935,"value":"top"},"directionOnDesktop":{"id":115695936,"value":"right"},"backgroundImage":{"id":115695937,"value":"https:\/\/images.podos.io\/i859h1mcihrnmdtiy3adkedwfevmzxqiemyb8nmecnqxrr4d.png.png?fy=0.36090543128212094&v=2"},"backgroundColor":{"id":115695938,"value":"#000"},"overlayOpacity":{"id":115695939,"value":"1"},"ratio":{"id":115695940,"value":"short"},"fullBackgroundColor":{"id":115695942,"value":"#fff0"},"published":{"id":115695943,"value":"1"},"conditions":{"id":115695944,"value":"[]"},"align":{"id":116005291,"value":"center"},"template":{"id":116005292,"value":"testimonial"}}},{"id":4669421,"type":"row","published":1,"size":{"x":12,"y":0},"order":14,"items":[{"id":4680615,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005308,"value":"

\u201cWhen I get up I have to be careful about how I'm getting out of bed because I\u00a0don't know how I've moved at night. <\/strong><\/p>

\"Things might have popped out of place, like I've\u00a0partly dislocated my knee in my sleep, I've dislocated my jaw, my ribs, my wrists, you know...\u201d<\/strong><\/p>"},"textColor":{"id":116005309,"value":"#fff"},"onTop":{"id":116005310,"value":"1"}}}],"properties":{"fullWidth":{"id":115695949,"value":"0"},"padding":{"id":115695950,"value":"3"},"borderRadius":{"id":115695951,"value":"4px"},"directionOnMobile":{"id":115695952,"value":"top"},"directionOnDesktop":{"id":115695953,"value":"left"},"backgroundImage":{"id":115695954,"value":"https:\/\/images.podos.io\/xozkugip8f2qgvde0z4offs0ox8x5dlf92xiqfcignvl1c96.png.png?fy=0.19737866317569625&v=2"},"backgroundColor":{"id":115695955,"value":"#{primary.color}"},"overlayOpacity":{"id":115695956,"value":"1"},"ratio":{"id":115695957,"value":"wide"},"fullBackgroundColor":{"id":115695959,"value":"#fff0"},"published":{"id":115695960,"value":"1"},"conditions":{"id":115695961,"value":"[]"},"align":{"id":116005306,"value":"center"},"template":{"id":116005307,"value":"testimonial"}}},{"id":4669423,"type":"row","published":1,"size":{"x":12,"y":0},"order":13,"items":[{"id":4680614,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005303,"value":"

\u201cSome days I can run, some days I can do hikes... most of the time I spend sitting in bed, resting.<\/strong><\/p>

\"I have to take a lot of time to recuperate. I have to take a lot of medication, but people don't see that aspect of my life.<\/strong><\/p>

\"It's all behind closed doors and when people want to conceptualise disability, seeing is believing.\u201d<\/strong><\/p>"},"textColor":{"id":116005304,"value":"#fff"},"onTop":{"id":116005305,"value":"1"}}}],"properties":{"fullWidth":{"id":115695966,"value":"0"},"padding":{"id":115695967,"value":"3"},"borderRadius":{"id":115695968,"value":"4px"},"directionOnMobile":{"id":115695969,"value":"top"},"directionOnDesktop":{"id":115695970,"value":"right"},"backgroundImage":{"id":115695971,"value":"https:\/\/images.podos.io\/nab8iy2bogtvj8zedzd9imkg11ycfsjppqsalgjrccgn2o5b.png.png?fy=0.40660864668040025&v=2"},"backgroundColor":{"id":115695972,"value":"#000"},"overlayOpacity":{"id":115695973,"value":"1"},"ratio":{"id":115695974,"value":"short"},"fullBackgroundColor":{"id":115695976,"value":"#fff0"},"published":{"id":115695977,"value":"1"},"conditions":{"id":115695978,"value":"[]"},"align":{"id":116005301,"value":"center"},"template":{"id":116005302,"value":"testimonial"}}},{"id":4669425,"type":"row","published":1,"size":{"x":12,"y":0},"order":6,"items":[{"id":4680608,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005273,"value":"

\"I'd say the hardest part\u00a0of all of it has been seeing her in pain\u00a0every day, and knowing that there's\u00a0nothing we can do to fix it.<\/strong><\/p>

\"And the thing with\u00a0Ehlers-Danlos is you don't get fixed.\"<\/strong><\/p>"},"textColor":{"id":116005274,"value":"#fff"},"onTop":{"id":116005275,"value":"1"}}}],"properties":{"fullWidth":{"id":115695983,"value":"0"},"padding":{"id":115695984,"value":"3"},"borderRadius":{"id":115695985,"value":"4px"},"directionOnMobile":{"id":115695986,"value":"top"},"directionOnDesktop":{"id":115695987,"value":"right"},"backgroundImage":{"id":115695988,"value":"https:\/\/images.podos.io\/bbap28qyuekajj0cw7j6uvnztmkf1skgbwrkyf5bc4hugsyv.png"},"backgroundColor":{"id":115695989,"value":"#000"},"overlayOpacity":{"id":115695990,"value":"1"},"ratio":{"id":115695991,"value":"short"},"fullBackgroundColor":{"id":115695993,"value":"#fff0"},"published":{"id":115695994,"value":"1"},"conditions":{"id":115695995,"value":"[]"},"align":{"id":116005271,"value":"center"},"template":{"id":116005272,"value":"testimonial"}}},{"id":4669427,"type":"row","published":1,"size":{"x":12,"y":0},"order":12,"items":[{"id":4680613,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005298,"value":"

\u201cThe hardest part has been that it's invisible and\u00a0people can't tell how much pain I'm in, which is something I wish others knew or understood.\u00a0<\/strong><\/p>

\"But every day I do have pain somewhere in my body,\u00a0even if that's just a really bad headache. I\u00a0don't know what pain-free is. I just don't.\u201d<\/strong><\/p>"},"textColor":{"id":116005299,"value":"#fff"},"onTop":{"id":116005300,"value":"1"}}}],"properties":{"fullWidth":{"id":115696000,"value":"0"},"padding":{"id":115696001,"value":"3"},"borderRadius":{"id":115696002,"value":"4px"},"directionOnMobile":{"id":115696003,"value":"top"},"directionOnDesktop":{"id":115696004,"value":"left"},"backgroundImage":{"id":115696005,"value":"https:\/\/images.podos.io\/yj1d0qwh0msn8ywxf9j12vjbdea9gpycjrsnl7m3oolvfjgu.png.png?fy=0.21804569504558452&v=2"},"backgroundColor":{"id":115696006,"value":"#{primary.color}"},"overlayOpacity":{"id":115696007,"value":"1"},"ratio":{"id":115696008,"value":"wide"},"fullBackgroundColor":{"id":115696010,"value":"#fff0"},"published":{"id":115696011,"value":"1"},"conditions":{"id":115696012,"value":"[]"},"align":{"id":116005296,"value":"center"},"template":{"id":116005297,"value":"testimonial"}}},{"id":4669430,"type":"row","published":1,"size":{"x":12,"y":0},"order":16,"items":[{"id":4680617,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005318,"value":"

\u201cI hope I look fairly well most of the time, but I have bad days when I have low energy and fatigue, and I probably don't look very well.<\/strong><\/p>

\"But you don't have to look sick to have EDS. Telling people that they don't look sick is just incorrect - it's an invisible illness.<\/strong><\/p>

\"We're some of the most resilient people there are. We want to get out, we want to do stuff.\u201d<\/strong><\/p>"},"textColor":{"id":116005319,"value":"#fff"},"onTop":{"id":116005320,"value":"1"}}}],"properties":{"fullWidth":{"id":115696022,"value":"0"},"padding":{"id":115696023,"value":"6"},"borderRadius":{"id":115696024,"value":"4px"},"directionOnMobile":{"id":115696025,"value":"top"},"directionOnDesktop":{"id":115696026,"value":"left"},"backgroundImage":{"id":115696027,"value":"https:\/\/images.podos.io\/zvixsjhf6laprkg0quyfcpi9chio9gyzsqdt7o3otwupboyv.png.png?fy=0.212353451241921&v=2"},"backgroundColor":{"id":115696028,"value":"#{primary.color}"},"overlayOpacity":{"id":115696029,"value":"1"},"ratio":{"id":115696030,"value":"wide"},"fullBackgroundColor":{"id":115696032,"value":"#fff0"},"published":{"id":115696033,"value":"1"},"conditions":{"id":115696034,"value":"[]"},"align":{"id":116005316,"value":"center"},"template":{"id":116005317,"value":"testimonial"}}},{"id":4669501,"type":"row","published":1,"size":{"x":12,"y":0},"order":7,"items":[{"id":4680609,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005278,"value":"

\u201cMy body is at war, a constant battle of pain and determination, exhaustion and willpower.<\/strong><\/p>

\"Physical pain must be faced daily. It is a battle which must be fought but can never be won. It's exhausting, it's unpredictable.\u201d<\/strong><\/p>"},"textColor":{"id":116005279,"value":"#fff"},"onTop":{"id":116005280,"value":"1"}}}],"properties":{"fullWidth":{"id":115701849,"value":"0"},"padding":{"id":115701850,"value":"3"},"borderRadius":{"id":115701851,"value":"4px"},"directionOnMobile":{"id":115701852,"value":"top"},"directionOnDesktop":{"id":115701853,"value":"left"},"backgroundImage":{"id":115701854,"value":"https:\/\/images.podos.io\/jsqmexuzse1vatms4ewh25ol1irtl2ujizkexumou9kuvhov.png"},"backgroundColor":{"id":115701855,"value":"#{primary.color}"},"overlayOpacity":{"id":115701856,"value":"1"},"ratio":{"id":115701857,"value":"wide"},"fullBackgroundColor":{"id":115701859,"value":"#fff0"},"published":{"id":115701860,"value":"1"},"conditions":{"id":115701861,"value":"[]"},"align":{"id":116005276,"value":"center"},"template":{"id":116005277,"value":"testimonial"}}},{"id":4669503,"type":"row","published":1,"size":{"x":12,"y":0},"order":8,"items":[{"id":4680610,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005283,"value":"

\u201cThe trick is to act as normal as possible. If I can fool others, maybe I can fool myself.<\/strong><\/p>

\"And then I break. I struggle to accept my limitations.\u201d<\/strong><\/p>"},"textColor":{"id":116005284,"value":"#fff"},"onTop":{"id":116005285,"value":"1"}}}],"properties":{"fullWidth":{"id":115701866,"value":"0"},"padding":{"id":115701867,"value":"3"},"borderRadius":{"id":115701868,"value":"4px"},"directionOnMobile":{"id":115701869,"value":"top"},"directionOnDesktop":{"id":115701870,"value":"right"},"backgroundImage":{"id":115701871,"value":"https:\/\/images.podos.io\/ggwmtidmcq7rpce5ymwumt2ryembj6t8jzeidqnegwhj3zii.png.png?z=1.2000000000000002&fx=0.4384587600479756&fy=0.6330310223810925&v=2"},"backgroundColor":{"id":115701872,"value":"#000"},"overlayOpacity":{"id":115701873,"value":"1"},"ratio":{"id":115701874,"value":"short"},"fullBackgroundColor":{"id":115701876,"value":"#fff0"},"published":{"id":115701877,"value":"1"},"conditions":{"id":115701878,"value":"[]"},"align":{"id":116005281,"value":"center"},"template":{"id":116005282,"value":"testimonial"}}},{"id":4669505,"type":"quote","published":1,"size":{"x":12,"y":0},"order":9,"items":[],"properties":{"padding":{"id":115702158,"value":"3"},"quote":{"id":115702159,"value":"In Ehlers-Danlos Syndrome, individuals can perform an activity and feel fine at the time, only to experience a severe increase in pain, fatigue, and other symptoms hours or days later. It is a hallmark of the condition."},"author":{"id":115702160,"value":null},"font":{"id":115702161,"value":"#{quote.text.font}"},"fontSize":{"id":115702162,"value":"25"},"textColor":{"id":115702163,"value":"#{quote.text.color}"},"textShadow":{"id":115702164,"value":"#{quote.text.shadow}"},"backgroundColor":{"id":115702165,"value":"#0000"},"borderRadius":{"id":115702166,"value":"#{quote.border.radius}"},"align":{"id":115702167,"value":"left"},"template":{"id":115702168,"value":"quote"},"fullWidth":{"id":115702169,"value":"0"},"fullBackgroundColor":{"id":115702170,"value":"#{quote.fullBackground.color}"},"published":{"id":115702171,"value":"1"},"conditions":{"id":115702172,"value":"[]"}}},{"id":4669506,"type":"row","published":1,"size":{"x":12,"y":0},"order":10,"items":[{"id":4680611,"type":"textBlock","published":1,"size":{"x":12,"y":0},"order":0,"items":[],"properties":{"html":{"id":116005288,"value":"

\u201cI still vividly remember asking my co-workers 'Don't you just hate it when you get home and everything hurts, and the pain keeps you up, but you still gotta work tomorrow?'<\/strong><\/p>

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Teemill is an ethical print-on-demand service that supplies fundraising products for the likes of Greenpeace, the RSPB, Wildlife Trusts, BBC Earth, Chris Packham and more. We have teamed up with Teemill to offer a selection of EDS-related gifts. 100% of profits<\/strong> will go into social media advertising to promote this website and educate people about life with EDS.<\/p>"},"template":{"id":116005336,"value":"feature"},"padding":{"id":116005337,"value":"3"},"fullWidth":{"id":116005338,"value":"0"},"fullBackgroundColor":{"id":116005339,"value":"#{feature.fullBackground.color}"},"published":{"id":116005340,"value":"1"},"conditions":{"id":116005341,"value":"[]"}}}],"properties":{"isStorePage":{"id":115134427,"value":"1"},"title":{"id":115134428,"value":"Home"},"ogImage":{"id":115650187,"value":"https:\/\/images.podos.io\/okp9gzx3amldcnkqgxw5apkiods1dtkdsnevf3gkwdq0vlq4.png.png?w=1200&h=auto"},"description":{"id":116005428,"value":"Expert information on the effects of living with EDS, for professionals in contact with sufferers"}},"labels":[],"published":1,"sitemap":1,"divisionId":413924,"edited":true}