I didn’t know anything about EDS or HSD until recently and I’m convinced this is what has been going on with me. My whole life I’ve had many injuries,pain,my joints not feeling like they’re in there properly and things going on with mult body systems. Also just found out I have a chiari malformation and diagnosed with ASD&ADHD this year. Will be going to EDS website and looking for doc in my area. Thank you for all the info!!
Hi, we are a family of diagnosed EDS here in New Zealand. We are from london. Both myself and my 2 children( 9 abd 14) were diagnosed this year. Thank you for this video ❤
I'd love to see a full mobility aid collection! I have chronic fatigue syndrome and possibly POTS it's taken ages to figure out what was going on! I definitely rely on mobility aids for support ❤
Hello, Just a small clarification. You can be diagnosed with HSD even if you meet all the other hEDS criteria (skin fragility, POTS, etc.) , if you have a Beighton score lower than 4 if you are an adult. This, even if you have hypermobile joints that aren't part of the score. It's not great because depending on where you live, it drastically limits the care you can get. Some doctors are aware of that and will still give you an hEDS diagnosis, but mine, despite having almost everything else, shittu shoulders and hips and even a Chiari malformation suspicion, didn't.
Love your channel and it's helped me lots educating myself as support is significantly lacking where I am. I think this is more applicable for people with more mild conditions, but I wanted to share a piece of advice I've had to learn the hard way: Keep moving as much as you safely can. My symptoms became quite disabling after getting heatstroke 5 years ago, as I wasn't able to be physically active, basically at all, for about a year. I lost so much strength and energy. I've always loved walking and was so scared I wouldn't be able to go on long walks like I used to be able to, and for a few years I couldn't. Since the start of 2024 I made my new years resolution to try and do some sort of walking each day, even if it was just to walk from my house to the end of my cul de sac. It's really hard some days, due to pain, mental health, fatigue etc etc. but I recently was prescribed colchicine, and that has really helped to manage my base line pain and inflammation, and made it easier to do more walking. I'm amazed how much my strength and joint pain has improved, and I've been able to reintroduce some more physically demanding elements I missed being able to do. Even without the new medication, my constant pain was getting better and better. I now am starting to go on hikes again, and I am so happy that it's become a possibility for me. It's still not as easy as it used to be, but just getting to explore nature again has made me so happy and I wanted to share it :)
Thank you Amanda I'm so pleased to hear that and thank you so much for sharing some of your journey I'm so so glad you've found something that's been so helpful for you xx
This is such a good video. You basically say what I always want to say when I explain my condition, but never manage to. I am sharing this on my fb and will save it to send if someone want to know more about my EDS. Thank you!!
My rheumatology team refuse to assess me for HEDS because I have a diagnoses of Neuro-Behcet's (vasculitis). Their reasoning was "it won't make any difference to your life or treatment" it made a heck of a difference when I needed a hysterectomy following pregnancy and traumatic childbirth. My obs/gynae consultant said my need for a hysterectomy was directly as a result of my hypermobility. There is a LOT of hypermobility in my family and extended family. I am now in my 40s and every time I bring up EDS it is either dismissed outright or as above, I'm told "why does it matter" etc. I do best I can to look after my joints and skin but I feel badly let down. There are definitely issues I experience which are not as a result of my Behcets and are not related to my being Autistic either. There are definitely some overlapping features though!
Hey ! I'm Cory, and I also have EDS. I'm mostly spreading awareness in french since there's not a lot of content about this topic in my main language. I also have a "thing" for holidays celebrating globaly every day so infodump moment : Today (May 16) is global light Day, boys Day, horses rescue Day and accessibility awareness Day. That's a fun hobby of mine, it knowing those fun facts help me spread awareness on some topics, but also have fun subject of conversation (I kinda suck with small talks). So yeah, that's for my little presentation to boost the algorithm and make people see their day differently ;) (also everyone remember tomorrow, May 17, is Reds4vEDS, everyone wear red to spread awareness for vEDS ;) ) Lots of spoons for every wonderful beings who have read this comment until the end ;)
Great to meet you Cory thanks so much for sharing! I love knowing about all the different awareness days! And thank you for the reminder about tomorrow got to find a great red outfit! X
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I didn’t know anything about EDS or HSD until recently and I’m convinced this is what has been going on with me. My whole life I’ve had many injuries,pain,my joints not feeling like they’re in there properly and things going on with mult body systems. Also just found out I have a chiari malformation and diagnosed with ASD&ADHD this year. Will be going to EDS website and looking for doc in my area. Thank you for all the info!!
Hi, we are a family of diagnosed EDS here in New Zealand. We are from london. Both myself and my 2 children( 9 abd 14) were diagnosed this year. Thank you for this video ❤
You're so welcome!! Sending loads of love to you and your family from (almost) London! Xx
I'd love to see a full mobility aid collection! I have chronic fatigue syndrome and possibly POTS it's taken ages to figure out what was going on! I definitely rely on mobility aids for support ❤
Stay tuned this is coming up very soon.
Poppy, Support Worker.
This was interesting and thank you for taking the time to do this! I have POTS syndrome myself. Have a great day!
We are glad you found this helpful.
Poppy, Support Worker
Hello,
Just a small clarification.
You can be diagnosed with HSD even if you meet all the other hEDS criteria (skin fragility, POTS, etc.) , if you have a Beighton score lower than 4 if you are an adult. This, even if you have hypermobile joints that aren't part of the score.
It's not great because depending on where you live, it drastically limits the care you can get.
Some doctors are aware of that and will still give you an hEDS diagnosis, but mine, despite having almost everything else, shittu shoulders and hips and even a Chiari malformation suspicion, didn't.
I needed this!❤ THANK YOU!!!
Love your channel and it's helped me lots educating myself as support is significantly lacking where I am.
I think this is more applicable for people with more mild conditions, but I wanted to share a piece of advice I've had to learn the hard way: Keep moving as much as you safely can.
My symptoms became quite disabling after getting heatstroke 5 years ago, as I wasn't able to be physically active, basically at all, for about a year. I lost so much strength and energy. I've always loved walking and was so scared I wouldn't be able to go on long walks like I used to be able to, and for a few years I couldn't. Since the start of 2024 I made my new years resolution to try and do some sort of walking each day, even if it was just to walk from my house to the end of my cul de sac. It's really hard some days, due to pain, mental health, fatigue etc etc. but I recently was prescribed colchicine, and that has really helped to manage my base line pain and inflammation, and made it easier to do more walking. I'm amazed how much my strength and joint pain has improved, and I've been able to reintroduce some more physically demanding elements I missed being able to do. Even without the new medication, my constant pain was getting better and better.
I now am starting to go on hikes again, and I am so happy that it's become a possibility for me. It's still not as easy as it used to be, but just getting to explore nature again has made me so happy and I wanted to share it :)
Thank you Amanda I'm so pleased to hear that and thank you so much for sharing some of your journey I'm so so glad you've found something that's been so helpful for you xx
This is such a good video. You basically say what I always want to say when I explain my condition, but never manage to. I am sharing this on my fb and will save it to send if someone want to know more about my EDS. Thank you!!
Thank you for sharing this, hope this makes it easier for you when it comes to explaining your condition.
Poppy, Support Worker
My rheumatology team refuse to assess me for HEDS because I have a diagnoses of Neuro-Behcet's (vasculitis). Their reasoning was "it won't make any difference to your life or treatment" it made a heck of a difference when I needed a hysterectomy following pregnancy and traumatic childbirth. My obs/gynae consultant said my need for a hysterectomy was directly as a result of my hypermobility. There is a LOT of hypermobility in my family and extended family. I am now in my 40s and every time I bring up EDS it is either dismissed outright or as above, I'm told "why does it matter" etc. I do best I can to look after my joints and skin but I feel badly let down. There are definitely issues I experience which are not as a result of my Behcets and are not related to my being Autistic either. There are definitely some overlapping features though!
I missed you over here! Thank you for another wonderful video xx
Thank you for watching, stay tuned for more videos very soon.
Poppy, Support Worker
Hey ! I'm Cory, and I also have EDS. I'm mostly spreading awareness in french since there's not a lot of content about this topic in my main language.
I also have a "thing" for holidays celebrating globaly every day so infodump moment : Today (May 16) is global light Day, boys Day, horses rescue Day and accessibility awareness Day. That's a fun hobby of mine, it knowing those fun facts help me spread awareness on some topics, but also have fun subject of conversation (I kinda suck with small talks).
So yeah, that's for my little presentation to boost the algorithm and make people see their day differently ;) (also everyone remember tomorrow, May 17, is Reds4vEDS, everyone wear red to spread awareness for vEDS ;) ) Lots of spoons for every wonderful beings who have read this comment until the end ;)
Great to meet you Cory thanks so much for sharing! I love knowing about all the different awareness days! And thank you for the reminder about tomorrow got to find a great red outfit! X
I love the way you present information. It’s so helpful and not overwhelming. Thank you for everything that you do for this community! 🦓🥄💜
Awh I'm so pleased to hear that and so glad you find this helpful! Thank you so much x
I’m convinced I have hEDS
Thanks so much i have been looking forward to your annual video for this year :)) ❤❤❤
Thank you for watching, stay tuned for more videos very soon.
Poppy, Support Worker