EDS & Me VLOG - Special Episode: Cambodia & Vietnam Cycle Challenge

EDS & Me VLOG - Special Episode: Cambodia & Vietnam Cycle Challenge

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The. Countdown is officially. Over and I, leave in the morning and, I couldn't feel more unprepared, actually. I'm, really, nervous about. A lot of things I'm, nervous about this virus, that's. Taking. It out a lot of China. Right now and no. We're not going to China but we're passing through areas, that, the virus has been and. Airports. And planes. Are, not great everywhere. I've been to try and get masks, have sold out so I'm praying that there's some in the airport, these are cycling, Shores and. These. Are a perfect example of, the limitations, of online, shopping. Because. You buy things they, arrive and as you can see I have, had an, abundance of Amazon, deliveries, and I've, got lots of different versions of this I've tried somewhere, up here I tried, some. Some, like knickers. As we call it pants, so it's just just the knickers but then, they don't give them support around the legs and the waist and, and and, basically apparently. What you're supposed to feel is a mattress, between your legs which, is just bizarre for me because it feels so uncomfortable it's already pushing in your legs I hate. The feeling of anything, tight around your legs so I'm just I'm really genuinely. Nervous that I've got the wrong things that I'm gonna be uncomfortable, that. Before I've even started I'm gonna be in pain then, you get these shorts, that go over it because frankly you've, got already weird, like puffy bum stitches. So these need to go over it what. Else do I have so I had to get some gloves because when, you're cycling for, up to 75, kilometres, a day yes, 75. Kilometres, a day you're. Gonna get pressure and, gotta, get padding, in the, gravel so I've had both, my wrists fierce and my wrists very, sensitive. And vulnerable areas. So I really want to make sure that there's good. Padding. Going through that with the bumps and everything else some of you may who follow me may know that I had a skin cancer, the end of 2018, so. I have to be incredibly careful about, the Sun and it, is 35. Degrees which, I don't know what that is in Fahrenheit really, hot like a hundred and something really.

Really Hot so I thought fifty, and this is really cool stuff and it actually when he works for me it's called P 20 and you, put it on and, it, lasts for ten hours which is fantastic when you're cycling you know keep reapplying, but. Then of course on top of that somewhere. In there you've got all your date like I've, got fifty percent DEET, for. The mosquitoes, and of, course because. There's mosquitoes. I've. Got all this malaria. Treatment so these, are preventative, pills Malarone, and you'll see here pediatric. Because I'm sure many of you can relate I really, struggle swallowing pills so. I'm, having to take so. Many boxes because. Literally. I have take four pills in one go for the adult oh so that's a real annoyance, but, you know. What. Else do we have we've got padded socks, we've got this. Really, cool bottle that keeps the water cold for up to 12 hours because. Chafing. Cream. Because. I don't, need to go into more, detail, a book because. What's travel without a book. And. Then I got these protein. Bars because, it's gonna be a billion degrees were basically cycling. On the Sun so, I didn't, couldn't have anything that would melt so. I got these crunchy, peanut protein bars cuz I'm gonna need or protein, I've. Tried lots of hydration. Tablets, so I'm. Taking a few of those but I'm going to try these ones a science. And sport that become highly, recommended, for cycling. Pineapple. Mango flavor could, be a bit funky it's got some be VIPs in there one. Of those a day and. Then more sites and sport I've got all of these isogenic. Energy, gels I'm gonna every. Morning make, sure I've got good carbs going in well. Imodium. Because. He wants to be cut short on, a bike ride, and. Let's, hope that what happens and then this is the resource so my work will be this for Christmas and, it is a black, and white monochrome film, kind. Of ready to shoot proper. Old-fashioned. Film. Camera and I just thought it'd be really cool to just take pictures the whole trip and not know what you've got and just come back and develop it, very clever loads, of fruit pass tons because, sometimes, when you're cycling and you're really low on energies, you need a big kick hit of sugar and, I'm not sure what sweets are like in Cambodia, and I know I. Already. Got here we got a whole box, of, protein, power powders. Said. Gold sounded way at. The end of each day I'm going to be taking some protein, power powder, so that I can give, himself the best chance of healing but.

I Can and now I have to put it all in the case um, I. Have. To be honest with you and Frank I don't know if. This is a challenge, I'm gonna complete, because. Going. Into this injured. And I'm. Going into it with. Not. The most amount, of training that I would have liked, it's. Been a really, busy year I've. Done what I can but, I have I, have, lots of Tears I've discussed I've got a glute - I've got a label tear and I've got ten and tearing my right leg well that sounds disastrous. Actually, they're really well maintained, with exercise, and they don't cause me too much pain on a day-to-day basis, as long as I'm engaging, my muscles regularly. However. I have. A meniscus tear. Right. Under in the inside of my knee here and it. Is really bad really. Bad at the moment probably the worst it's ever been like, the worst timing, and I've almost, gone to council this a few times but. I haven't, because, the the thing that you, know my physical therapists, recommend, and that I know helps, is, cycling, so, when I'm on the bike actually hurts, a lot less than when I'm walking but the problem is it. Really hurts when I'm walking so, I've got a brace I'm, hoping for the best but. You know what there's, no no. Shame. In giving up because this. Isn't about. It's about trying and, being, part of a team that have, dedicated their, time and energies into raising, awareness and funds for our, cause and, I'm just, delighted that I get to be part of that and I, hope I get to do every mile with them every kilometer, and I get to see the end but. If I don't that's okay too and I'm prepared for that mentally, and physically that I may have to jump in the van we. Pick this tour group this talk, operating. Company. And this route very carefully, it's almost, completely flat, there's, ebikes, there's. An emergency, van that drives with us the whole time so that if anyone in the party is struggling they can jump in the van and I, will do that if I need to, so. I'm gonna take you with me every, step of the way every kilometer. Every mile you're. Gonna get to join in with us and see. What it's like and see how, many fares, how. My. Bottom, fares in those shorts, how, we deal with the temperature, and. How we deal with the challenge, we're, also going to see if we can meet some zebras while we're there in, Cambodia, and Vietnam. And. We're planning to go and visit a hospital in Saigon, and take them some details on echo committing. Our promise to really, trying to educate as many people as we can around the world so. Thank you as ever it's. The end of January, the year is is is going, I don't know where I can't believe this trip is here so. Yeah. Join. Me join me in February and join me on this this mammoth challenge. When. Made it to Bangkok, token. Near me is. Found when stupid. Mars. Humans. Wearing a mask, it's. It's. Ona virus, outbreak, this. Northern. Alive be Tyler here someone cough I'm pretty. Scared. I. Think. Every single person, so. Far. Breathing. In all the fumes. Good. Morning, from Cambodia, we are on our way to an elephant. Sanctuary. Answer. Elephants, I'm promoting. The. Food that, we're gonna give the alphabet. Hey. Beauties. Elephant. Tracks. Just. On a casual, tourists followings. An elephant. Lunch, is, served. Other than sweet and five treats. He. Will eat like an elephant's, grown right it's like elephant kong toy. Son. Or induction. So, we've got our bikes got, my helmet reluctantly. I hate helmets but, look. That's the face I get. So. I, got. My bike it's. Gonna be my best buddy for the next week. We. Have this t-shirt that we're wearing in memory of crystal. Yeah. He. Passed away just a week or so ago basically, yes, we're.

Gonna Do a lake. In memory of crystal we've got cislunar, sports, in the. Special. Society Jersey. Something. In the morning that's for in it and, for the first time in my life I've. Overslept, and. Sent. My long for I thought was 3:30 percent, fine 3:25, just, check me around and. Realize, I. Had. A very rude awakening through, Karissa they, might where the hell are you so. I my. Helmet through my bike shoes want to go back like three times and. I'm interested but we've just got to angle what for. Some rides I don't know my gang in a new am where I am but, I know I'm there in court but, I am. While, sitting on the steps, watching. Hank or what which I'm going to show you there because it's just black so you can't see anything and it's 5:45. A.m.. We. Are all a. Little sleepy, they're, very excited, because. Over. There in about 45, minutes, why didn't take a summer sunny is. Gonna, be the sunrise over the oldest, religious, site in the world and that is where we begin all right. This. Is it we, already. We. Are with our bikes we, are suited. And. Booted, padded. Shorts are on, helmet. Is on, we. Are all good to go deep, spray. Sunscreen. Nothing. But the open road. Ahead. Of us. Just riding through some villages. Through. The jungle. We. Are basically going, from Temple. To Temple and. It's. Like a, beauty. That's hard to describe it's, incredible, and. It's. Pretty uneven. We've. Had a few people for, no. One is it injured and pleased to say, but. This is day one and. I think it's more of a challenge than people thought in terms of touring. But. It's incredible, it's magical. My. Bum hurts more than I can explain but that was incredible. And, it feels, amazing. I. Felt. Really good like I thought controlled by the, ebike yes, you know so we, just, chose to cycle back to the hotel and the other heart the. Bus and, I was like 10-15, minutes in and I was like this is so much harder than this morning. And. The guy came up a moment ago you can tell you if icon if you want okay that's, why I thought I was just so exhausted so, the second you put on it does certainly help but we, still feel it you know you're not flying. It doesn't take it away but, it certainly makes it better. We. Have just finished day one, of my, EVs challenge, with ten incredible. Dedicated. People that have, been doing lots of training, and are. Here, trying to cycle, anywhere from 30 kilometers, to 75, kilometers, each day for, the next eight days and, we thought it would be really nice to share with you why these people are doing this what it means to them and also, share. With you the kind of things that we're thinking about when we ride so, for every single day that we do it we are having someone, in our heads that we're thinking about and it, could be a memory of someone it could be thinking about a group of people but, today we kicked off and we had Nancy Rogowski, in our heads I wanted to speak to one of our one of the people on this trip here Linda. Who, worked, with Nancy, and can tell us a little bit more about why we pick Nancy to kick off its so, Linda. Tell, everyone a little bit about, why you decided to come on this trip and. I. Came. On this trip because I wanted a challenge, at the same time of really bringing.

Awareness To. Ehlers-danlos. Syndrome, and. HSD, and my. Goal is to really work, on. The education, of healthcare professionals I, think that's an area that. We. Can always use more education. And more awareness, which. Will help with diagnosis. And treatment. Rather. Than the research and it is and, as a health care professional myself. I feel, like that's really important. Amazing, Linda's, one of all-star fundraisers. At the moment she's knocking us all out the park amazing, Ray's an amazing amount of money and of course out of everyone you knew Nancy the. Most so can you tell us a little bit about Nancy, who she was she was it, actually. A very very close friend. Nancy. Sarah t'v II D and F what. She did was she wrote to every, geneticist, in the country, way, back in you, know, 1985. Asking. The Genesis, if they knew it had any patients that were diagnosed with ETS and if she could pass on their phone number this is way before the internet this is, before. Email, really took off so these were handwritten letters, with. A stamp that she sent and she. Started, the foundation with, ten families, I was, not one of the original ten, I, became. Involved with foundation, in 1989. But. EDF. Was incorporated. In. 1986. I believe in Southgate, Michigan, with. These ten charter families, and, really. To bring awareness to, ehlers-danlos. And, to also educate, healthcare professionals. Amazing. And how does it feel for you being. Here starting. With ten families, now we've got 90, something thousand, families following, us on social media and seeing. How it's grown it's now a global initial, mission with the ehlers-danlos, society how does that feel to you it's. Nothing, I could have found them back in 1989. And, I know that, Nancy. Is. Smiling. Down upon all, of us but I don't think this is anything she found them but it just goes to show you you start with one person and, you build from there and you don't give up and. The. Difference, in society is, making, for. Thousands. And thousands, of people it's just it's, mind-blowing, for me because I been, involved with the foundation for so long but I really. Feel like. 100%. The. Mission and the vision is, spot-on. For what Nancy was making. Back then amazing. And you've had some challenges. Today on the bike and, and it's not easy for any of us but tell, people for you why you're trying. To attempt to get over those challenges, while you're putting your, EDS body through this and what it means to you I've. Always tried. To not use EDS, as an excuse, when I have a goal to do something, I was raised, in a family where my father really, strongly taught us that if, you want something bad enough you find. A way to do it it may be a different, way and, it. Was just really important, for me to come on this challenge, and today, was a little rough day I finished but I had five crashes, I, now, have. Decided that driving, in snow is less challenging than. Taking, a mountain bike on socks, and because. That was where most of my crashes, were but I you, know dusted, myself off each time and, got up and I said if. Nancy could start this foundation, I can finish this a day. Absolute. Champion and next to Linda we have Susan, so Susan is the current, chair of the, board and is also here with her husband Cecil, doing, the challenge and so what did it mean for you to come and take part in this ah you. Know it was just a great day, I've, been looking forward to, this since I signed up in May and, I wanted to do this challenge for, the people that couldn't, get out here and bike ride not. Being said half of us here, today how videos not myself, it. Wasn't so much a physical challenge, for, me but I was really inspired by the people. Yeah. So. Time and, it's a great way to raise some money and raise awareness. This. Terrible condition, so we have, s. Joe who. Some of you may recognize the dog volunteer, coordinator to hide everyone s to everyone, and. We, have professor, Francisco, Malfoy who's our chief scientific.

Officer And. This was actually her original, challenge, so we're all here because, of her things. Just. Met Susan we. Have Linda we, have Cecil. We, have Siobhan. And we. Have Eileen. And you. Are going to be hearing more about them, every day so we're going to do it Facebook, live around this time every day, day. Two here. We go. We're. Having a water stop. Stop. And. It's very hot. But. It's been awesome how's everyone doing team we. Get wonderful we good 3d, awesome. Amazing. Hell. Of a lot of dust blows, back. It's. About driving we're riding on a lot. Of off-roading, and gravel, tracks. So, that's. Just. A boring pothole, that's. Quite tough on. The old ones. Contemplating. Maybe wearing a mask to worry. Francisca, is. Riding with no power just. Human strength yep. This, hot, she's hot. We're. All really hot it's very hot we've had cows children. Bikes. Cars, trucks. There's. Amazing. But. Lost Inga. We. Lost Inga. Oh she's. Hit okay. With. Some snacks you know one. Never. Enjoyed breathe. Biscuit. Things. Feeding. It, now. Is everyone. We. Made it back and I'd like to just show you. Today. We rode in honor of all of the health professionals, out there that. Really go the extra mile to make things better make our lives easier, for all of those living with EDS nhst, and so, we're gonna talk a little bit to both Inger, and ESCO, who are here with us now, as Joe you may recognize as our volunteer coordinator, and. Inger is from Ghent, in Belgium and. Is a physical therapist, and so, for. Us, Joe from a patient's, perspective why, is it, so, important, for you that we did this leg for our health professionals, out there so, for me personally my. Story, echoes probably. Many of yours I went through many years of different, doctors and misdiagnosis. And being. Told it was all in my head and that nothing. That I was telling the doctors was true and. It. Puts you in a certain place where you're just stuck. And then. You find that one doctor that, one doctor that listens that one doctor that helps you find, your. Answers and, it opens, your eyes it opens your world and it, just makes the biggest difference you finally, feel, heard and. There's. Not a price you can put on that an, Ingram, from a health professionals, perspective, why, do you think it's it's so important for you to have been part of this experience. There's. Multiple answers to that but mainly I'm very happy to be here with all of you because. I think movement. And physical therapy is such a central part of, the. Treatment for hypermobile EDS and for other EDS types because, the more you the healthier your body is the stronger you are the more your muscles will support your ligaments and your joints, but. Movement is not really easy, for everyone to start with so we try to adapt, the, and the sports to everyone.

Personally Individually for. Some people we just, use an e-bike because, it has to be supported for. Some people we have to move up or down the saddle to position. The joint correctly, so, I'm trying to help out as much as I can here also, with the lesions that are happening. But. So cycling. Is one of the best options to do and I thought I really want to be part of this and, show that movement, is possible, but it has to be looked, after by a. Healthcare. Professional and do you think from your point of view the EDS, the awareness has increased amongst your fellow health professionals. Around. Me, definitely. I. Think. I'm I know so many physios my friends. And people, I studied with and each of them has started to know EBS and all of them have also sort, of connected. To the therapist. That they know so in Belgium and around. Me closely, I think it has increased, definitely, for. Everyone that's missing that's a patient go thank your health professionals, for being, the ones to look out for you to care for you and if you haven't found yours yet we, are working so hard to ensure that you can have access to health professionals. If I raise how much I'm, going to each other. It's. Very. High. Day. Three, and. We are getting. Ready to load up. Today. We are cycling, in memory of all those who, have lost their lives to, vascular. Yes and we've got a special Thor in our mindful crystal, who. Is one of our champion. Advocates. Who lost her life just a few weeks ago from vets very. Suddenly, as. Is always usually the case with. Vascular. So. Special. One today thinking, about her. Awesome. Of a mountain and, there's. 620. Steps to get up. And. I'm. Having to just watch everyone go up, because. This for me is when. Pacing. And knowing, what's right for your body comes in you know it's really hard when you. Want to take pon everything, and I really want to see what's at the top of that mountain, but. With. My meniscus tear on my hip tear and my label tear like stairs I know kill, me and walking really, helps me too. So. I'm. Gonna stay down here because you can't always do everything, and. You. Know I think that that's really important, you know a lot of people are, angry with me because I do a lot of movement. And active, things but actually, I do what's right for my body and I do I, do. Not do things when, it hurts and when it's not right and it's different for everyone you know as people that have gone up there they, haven't been cycling, that's their choice and that's what they do for their body you. Just. Got to make it work for you and whatever. Movement doesn't, hurt too much. Today. We, wrote in memory of an incredibly, special lady, who is very, close to my heart and her name is crystal, and crystal. Passed away just a few weeks ago from vascular, EDS and so, today we kept her very close to our hearts and all, those that, have lost their lives from, vascular, EDS and I'm, sure many people have, heard about the stories.

Out There or, people that have lost their lives but it's, you, know there's also an incredibly strong, community, out there or have been living with this condition and. I, have, the absolute privilege, of. Being part of the beds collaborative, which. Is. It's the most incredible group, of people honestly. Are such strength, and determination. And. Dedication, to. Raising, awareness and trying to make things better for this it's such a cruel. Type of this, condition, it really is and it's, taking away far too many lives and we really did we had of course and we thought about all of those and, crystal. Is someone that I've got close to um, since, working for the society, she's spoken at our conferences, she's done some incredible, advocacy. Work for us for the purple zebra you, can see here we. Wore her t-shirts, today and you can see on the back here, what. We've put here and we all have these on, and. Krystal, left behind faith her daughter do. We also thought about today in Wayne her husband, so we thought about your whole family, and even. At her funeral they were promoting. Awareness, showing. The photos of her she. Did some incredible photo shoots with us really, always warrior. Pose and just fighting, the, whole time through, everything and crystal. Lost her mother and her brother to. This condition as well and thankfully. Her daughter faith actually. Does not have the genes that does not have vascular ABS so. To. Your family, you're with us today for every pedal every, ride you, can see here everyone, here wearing the t-shirts. I'll, show you t-shirts. Still. Everyone going, strong today. Was a bit tougher. It was really, hot today for some reason and we had a really, really bumpy, ride, we had tiny, little wooden bridges to come over we had roads, that were still being constructed to they'll be pebbles, that we had to deal with and roads. And we'd go down one way and we'd have to take another turn and so it was it was a little bit harder. Today but we still made it still. Going strong we're so grateful for all of your amazing positive, feedback, and comments it's honestly keeping us all going and we're. Thinking about you all and everyone tuning, in to watch this and numbers on these live videos are incredible, and we love you all for sticking with us these day for and. We are walking along the Mekong River of. Course. You know, this is another Island still passing, scenery. Beautiful. Everyone's, getting quite tired today my. Pain just tie it when. I'm on the banking of energy but soon as we stop, it's. Really hard to, be. Standing, to be lipsticks. Exhausting. Well. We've been going hard at it tomorrow we have a day. Oh. Hottest, part of the trip so far. Pushing. These bikes of, the. Hill. Today. We, rode on in the recently very special, and that is Camden, Camden is the son of Danielle who works in our development team at. This society. And Camden. At just 16 years old unfortunately, to, his life just, before Christmas, is very sudden and it, was incredibly, hard for the family, both, of these Danielle, who. We have the privilege to work with every day it. Reminded us as well when we were riding today at the struggles, were clogged immunity faced with me to healthier often. People who have had a very long journey to, their diagnosis. Some, people that still have not diagnose, and, that has real impacts, on mental. Health anxiety depression, PTSD. Being. Bounced from Doctor to doctor being, told it's all in your head not, having that validation and then also just, being, told you've got a chronic long-term rare, disease with, no treatment no management. Very, little access to things that will make your life excel, is very very hard to deal that psychologically. And we do see people taking their own lives too, often in our community, as well so we thought about all of those people as well today, was very special for us they. Can. Help many years. Have. Been a battle, much like many, yes. What. Happens, on chronic illness for the game brightness because he now has a toddler, and there really apparently. Have. Any illnesses. And. Anxiety. And ultimately, hospitals. Are a lot. He's lost with such a, solution, not, just. To all of those that amount, the runner family, that, would close its. For, Christmas I know many of us have lost not. Just as. In our own personal lives and it is so important, that we speak not about mental health awareness and, how, our physical health is very much, intertwined with, our mental health and, we cannot ignore one, just, ability. Absolute. Today circuit, oh. Thank. You for a, nice job you deserve it or about Lily. So. That's. Partly because, yes. It's such an, issue. That you lucky could be a benefit and, also make it. One. Of the hardest things that as, mediators.

Be Here are doctors, telling us that all of our doctors are now so. That I can say it's. Not. So. You. Just. Start. A conversation. It's. We're. In Phnom Penh we're, on our last morning here and I'm just casually, getting my breakfast, and this. Lady comes up to me know she is and, she says eh you'll are bloom she's I recognize you I follow you on Instagram and, she is here on vacation from Australia, and has of. All. The rooftops in, all the world, and we. So. You weren't. Aware of why we're here no I just had a quick, look on Instagram to check whether or not I thought that it was the right person and so that you guys were here but I hadn't I wasn't aware of what you guys are here doing in the fundraising in this amazing, such. Just mean world so we've met off first sepra out, on this trip completely randomly, from Australia, we, are, leaving. Cambodia. And. Got their bag. We, are heading to Vietnam, got our new vietnamese tour, right here, we're leaving some in, Cambodia, we're going to miss him long time, we're. Ready for a Vietnamese, adventure. Happy. Birthday. To. You. Happy. Birthday. Good. Morning. Vietnam. Trip. We, are here we are a bunch our first, ride in Vietnam. 75. Kilometers. They, fight, riding. And. We. Have arrived in Vietnam and it is be useful, very. Different, to. Cambodia. There. Is the roads, well pathways. Were using a much busier. Bustling. It's like being in a computer, game dodge. Puppy. The dog, chicken. The, rooster, that bike the small child. It's. Crazy but it's amazing. And. Today. We're. Riding for all those living with rarer. Types of the EVs it's 14 different types of EVs, 13. Of them are rare ultra. Rare very rare, ranging. As. Some types with only a handful of people around. The world living, with them. So. We're keeping all of those you, know you. Know mines. Rice, paddies, of Vietnam. Covering. That. Three, that was, a wise, decision. Real, industrial, products being used the countryside, sir. Paint. Varnish evening. We. Are all. Absolutely. Exhausted. And delirious, after. Our longest, ride yet 75. Kilometers, we're a smaller group tonight because a few. People have had to head to bed early because it was a really full-on. Day and tomorrow we've got the same distance, again but, we are still having a lot of fun today, we, rode thinking. About all of those in our community living, with the rarer types of ETS now, as you know or may not know there are 14 types of EVs and 13. Of them are sitting on. The rare disease spectrum, and as. Far as we know all 14 are at the moment but we definitely know 13. Of them are absolutely. Rare so, we are here with Professor. Francisco, mouthing who is our chief scientific, officer and, champion. Cycler, at the moment and if. You could just talk to us a little bit from your perspective, about why it was so important that we rode today thinking about those with, the rarer types, yeah. Yes, so I think it's. Very important. And most. Of them are rare or very, very rare for some, of these conditions, I like, only a handful, of people have been diagnosed. However. I do think that. There, are many people out there with.

These Forms or videos that have not yet, been not diagnosed, because these. Conditions are also very. Not. Very well. Known and. Like. For instance cycling. Here in Vietnam and Cambodia I've, been, thinking about this there must be like. People, with with, all these conditions, but nobody, has been diagnosed, here and. I think it's really important. To. Raise. Awareness also. For these conditions. To. Educate, doctors. About. How, they can recognize, these conditions, how they can diagnose, them but because for most of these there, is a, genetic. Diagnostic, test, and. Also. I, think it's very important. To do, research, into. The. Pathogenesis, of these, conditions because, they can learn us a lot about more. Common, high. Permeability and, tissue fragility. And also, of course it. Is our hope that one, day also, for these very conditions. But, have a cure, we, are currently, constructing. A new website that's gonna be live later this. Year which all, of the different types of EDS are going to have their own dedicated page, resources. Webinars, talks things. For people to print our emergency. Cards for. The. Emergency. Rooms and so, we're really building on that we're also holding, in Austria, if you could tell everyone a little bit more about that meeting we're holding in Austria the. Beginning. In. Austria, that is. Really. Dedicated, to the research that is, is. Going on on, the rare types. Researchers. Who are really doing, more basic, research like. Animal, models, other. Laboratory. Reagent. How. Genetic. Defect, actually. Leads to all, the signs and symptoms that we see in these rare conditions, and so, we. Hope that by. Doing, this we will also make. Other people, young people you young researchers. Enthusiastic. About these. Conditions, and and, we hope to attract. People, into the field and. Make. It more, attractive. To, work on yes. Yeah absolutely, and that so that meeting, is a closed meeting for, members in the rarer types group, of the international, consortium but, we do have meetings. Available, for the community this year for the rarer types we do have a ved summer camp which will be opening. Registration, in the next month which. Is really exciting and that is obviously the social side of a, summer camp we also have a whole, day dedicated to, education, and talks from, people all over the world for, both adults and and, children. And young adults so we're really excited to put that program out soon and, we also then have it later on in the year I think is September. In. Houston. We have a meeting for classical, eds a day. For patients a day, for professionals, so lots and lots and lots of things to look out for on our website, on our social media so. Stay tuned and thank, you we know that there are less people on, our community, living with these types you, are all equally, as important. To us in to our mission and we. We, are looking forward to being able to provide, as much as we can to make your quality of life as good as it can be, here's. Our last day. No. One wants it to end I only got 75, kilometers. To go. They. Fix. Final. Ride in Vietnam. And. I'm truly gutted, it's come to an end we've. Just started so we've got probably, another 17. To 7 to 3 kilometers to go. I'm. Savoring every, single, kilometer. Today, we, write for, every. Single, member in our community, that couldn't be here with us today. And. For this culture every. Type, every. Part sweatsuit, within that type all. Those with HSD and, all, those yet to be diagnosed. Today, we are slightly. And. You. Know there's a lot of people that may have felt excluded by this challenge. And. There are people that couldn't do this but there are people that cook and. Have and. I, think there's, no right and wrong way to live with this conviction. Another. Society we want to provide opportunities, for part. Of that spectrum. Are, medical and health professionals. This. Has raised a lot of money, raising. Awareness on the way, and. I think the messages, of support, that. We have had we've also impacted. A lot people at home. Giving. Them hope. Inspire. Them. So, I'm delighted, it's. Been a true success. You're. Learning how, fast. Is amazing. Well. Yes. Suddenly. The pole. Because. Everyone's. Tired. Suddenly. During. 270. Plus one to ride bikes package. Showing. Drinking. The shower. Team. Zebra, we. Did. Today. We, wrote for all, of our community, for, every, single type of you yes for HSD, every. Single age demographic. Out there before, it. Was really really important for us to, keep everyone, out hoping I might fall are you doing this because, a lot.

Of People have said before you know why pick Cambodia. Why pick a bike ride there's lots of people out there that write ups but there. Are people and. There's, no right or wrong way to live with this condition there's. People that are in wheelchairs that, use crutches these, braces, but there are people out there that do do a lot of movement, and exercise and. That's a cartoon this is a great, step and we've what we chose a completely. Flat piece he bites and, we're. Also. Able to climb a mountain and. Curtail, my bike riding for the rest of the time I. Give. Me a lot of time to spend just. Reflecting, out myself I, feel like even. One day of cycling, in one day not. Climbing, it was more, it. Was still an adventure for me. So I have a bucket list and it's now in the form of post-it, notes on my wall and they're like about 65, of them right now. And. This. Challenge, basically. Met like three of my bucket, list items, and, this bucket list isn't something isn't. A list of things that I have to do in my lifetime it's just a list of things that I maybe. Someday I can do, is something to look forward to to to, kind of keep. Me going forward and, I, really wanted to do like you I think like along, like. Kind of endurance journey I, wanted. To learn. How to ride a bike like city cycling was on my on my bucket, list, spending. Time with Laura was on my knee was, because. I saw her. Documentary. Issues, with my tissues and she had an attitude towards. Life like yes that, I really identified, with and I hadn't, seen that before and, so that kind. Of inspired me to keep, going and be my own person, and take risks with you yes that. Are safe. Yeah. And I'm also super interested, in ehlers-danlos, research and while this isn't being, a lab actually, conducting, research. Raising. Money for research of ehlers-danlos, syndrome and. Related, conditions is super important, to me and. I, found. Out about this, challenge six months after I learned, how to ride a bike for the first time. So. It just seems like that's, my attitude is like oh yeah. I learned how to do this I'm gonna take hits for the next or like five levels, up from this why, not um. The. Worst that could happen is I can feel but. Trying is more important I joked. That when. I do this challenge I wouldn't get hurt on the bike aspect, I always get doing, something else well I guess they're jinx to myself we, discovered how slippery, eat and tile floors are had. About it maybe. Two foot fall ankle. Twisted heel. Got. Through maybe a day and a half of cycling, and I just couldn't, known anymore and, it. Was really. Hard for the, next two days after that and I'm, glad I had Linda with me because, we had some really good talks on the bus and I realized that my challenge. Wasn't. Coming, out here and cycling all these miles my. Personal, challenge was. Listening to my body because, I know at, home I don't always, listen to it so, as, hard. As it was to sit on the bus. This. Was the lesson I needed this was my challenge my challenge, was to take care of me and not, compromise my goal. Well. I didn't get to ride I still had an adventure of a lifetime and I really, I, found. The lesson that I needed to learn, comin. And III well I obviously I came because. I. Was. An author nanny, and 30 odd years ago and one of my little. Girls has EDS, so I've been in contact with, with. The family for many many years and and, so I kind, of was aware but every time I was in their, company they put on a great brain, phrase so I didn't actually see any of the symptoms of EDS, I knew I knew she was in pain I knew she had been in a wheelchair and you should major surgery what, I didn't really know what EDS was and so I was dreading that question, you know that questions on what CTS thank, God Eileen jumped.

In Front of me and I know what when someone asked what's EDS and just as I said the name finally. Goes well allergy Lord you know to, not to explain and so and I spent I spent ten days with, absolutely, fantastic, people and I've, been. Quiz ative and I've learned. And they've, been sharing their story some are horrific, that brought me to tears and I. Just look at Linda and I look at, look at everyone. Around the table and it's it's amazing us as, to how they're getting out of the bed and actually doing this right I mean we need to 70. Ches back-to-back, and, I. Am. Full thickness right I've climbed Kilimanjaro this, year and it's. Like this is not how, are you doing with all this pain right but. But today and, actually. The guide I was like go zebras, and the guises and why, zebras. Are so, proud of myself because I, actually, said well did. You know that when, when, you hear hoof. Beats it's not always a horse like seriously. Bigger. Right and, I, said that's that's what's good, EDS is in a nutshell right because, there's, so many diagnosis, it's not the obvious and then, I was even more proud of it to the next level I can just say I said, not, every, zebra, has the same strength I don't know if you got my. ABS. Not. Every, person has the same symptoms, so like the zebra, or zebra is a. Perfect. You. Know example, or motto for a mascot. So I should say and for, EDS and I like to explain that even early on yup she is not no it's like, past. Attack so we're gonna do we've. Been. Fantastic, it's it's. Been, a lot of fun first of all it's challenge so it should be work and challenging, but it was that and so much more I really. Enjoy. Cycling. With, with, people that, have abs and people that don't and. Seeing. The beautiful countryside, and, meeting the people it's. Been a great trip mm-hmm any seasons. Well. The. EDS portion, was the key for me and that's why I came but. It's. The people that I enjoyed, the most I love Cambodia. Love visiting, it but at Vietnam but the. Group to spirit, the the. Commodity, is what I. Love, and that's. The memory I'll go man. I'm Francisco. After. Sweeping for unit yeah it's. Been a wonderful week, I think. Experience. It was really. Sharing. All these adventures with all people around the table here. It's. Been a challenge, for. I've. Been doing, without. The. Ebike and. Sometimes. It was hard to keep up with the. Other people, and, so. My muscles, are aching right, now -. I'm. Really really glad. We. Really raise awareness and. The. Incas also physical therapists has been helping the group with pains, today I had, really, bad muscle pains in my arms, from holding the the handles, so tightly and got, a fantastic massage. At. Lunch so thank you for that what's this week been for you um. I've. Seen so many courageous, people especially because. I've. Been training a bit because my boyfriend, makes me train. And. I can see how exercising. Daily can, be so so difficult and such such.

A Such. A challenge basically especially. When you're in pain even for me I've got a busy job I don't always do the exercises, I'm supposed to do so, I'm very, happy that like I mean she's. Had such a difficult youth. And growing up with this condition, she's. Just done so much effort. So I've been very surprised, it's exceeded what, everybody's, been able to do and. I've also learned a bit more, for, talent for for guiding mighty deactivations, I think that cycling. And the ebike is probably, an option that I haven't. Looked into as much because it's so adjustable, I mean if, there's knee problems, change. The bike a bit to jobs or operations even. For us the ABS I have. A thing that you can do because. The blood pressure doesn't go up as much so I think cycling. Is is something that's underrated. I think many people that can't really walk very well may be able to psych it a bit supportive, so it's. Something we should look into a bit more I think so. Thank you again and, we, are signing off from the last time, so goodbye from us in Vietnam. Hi. Thank, you. Happy. Birthday. To. You. Happy. Birthday. Princess. Happy. Birthday. Back. At the airport, hopefully. You can hear me you. Can see behind me. Everyone. Has one of these on, so. I. Panicked. A bit and got my help get me I think. I'm worn it the whole trip other. Than the. Original flight, over. I. Guess. Probably. A good idea to wear it in the Air Force. But. It's, time to go home. So. I'm home. Amazingly. It's all over, and it's compost. So quickly. I'm. Totally exhausted, the, jet lag has hit. Me more than I thought it would and. As. Usual, I'm, feeling, it afterwards, more than I felt it during I'm, not in pain, my. Body's just tired. I mean understandably. I cycled. 303. Kilometers. Which. Isn't my server done in my life so. I'm. Not overly worried but I'm tired, I think, everyone that took part is and you. Can't underestimate what, you know, 17 18 hours of travel does, do. You. Especially. Then. Coming back in dealing with the chat like so yeah. It's, um it, was an, incredible. Adventure. And I, loved, every. Single minute of it my. Highlights. Were. Just, the, kind of cultural, explosion, the. Privilege, of being able to ride through these. You, know rural. Villages. Where tourists, just don't ever go and. Cycling. Past them kind, of feeling the amazing temperatures, and the wind in your face and, not feeling the heat because the wind just balanced, out perfectly, and going. From village to village with everyone, just shouting hello and, cheering you on and happy, to see you and welcoming, and friendly. Just. You know good food and. Efforts. Being made constantly. To. Give us a comfortable, enjoyable experience. And it was just amazing. The. People were fantastic, our group was wonderful. You. Know everyone, dealt with their own challenges and their own struggles, through it. Which. Was, you. Know humbling, to see you. Know from. Susan. Inga, and. Francisca. Using. No e-bikes and not, pushing them Francisco, on one day got heat stroke and. / did in you, know from as John Linda not being able to do it in, the way that they thought they wouldn't and overcoming, that and. Yeah. It was just it was amazing it was amazing to meet new people why lean and Chevy who. Were fantastic. Parts, of the whole experience. And. It's. Just really really good to be home so, I hope you've enjoyed, sharing this. Incredible. Journey. With, me three, two countries. And. We. Are making a little film out of it so you.

Will See not just this. Through my eyes but, through everyone's, eyes that to find this so keep, an eye out for that. To. Subscribe. You.

2020-03-10 10:41

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