Thank you so much for this, I had dissections in both my carotid arteries Jan 2022, I wasn't taken seriously, I have been so ill, yet I was dismissed for 10 months, when finally ENT sent me for an angiogram. He even warned it was unlikely they'd find anything wrong! Within a week he called me and let me know, since then I have had test after test, I've told them it's Veds as I have had issues since I was a child, hypermobile, dislocations, easy bruised, stretch marks in unusual places etc.. your story almost mimics my own. However, I have just been referred to genetics from my rheumatologist. I am concerned for my son, he has the criteria for EDS.
I've come across your channel in my search for answers because I suspect I may have VEDS. I've never thought about something like this because I have another rare genetic condition but over the last 4 months my health has done a complete 180 and bothered me in ways my other condition never has. Not to mention all the medical gaslighting... My neuro suggested POTS which led me to EDS. I was wondering if you have been symptomatic all your life or if things seemingly 'flipped a switch' or were 'triggered' for you at some point? While I hope I'm wrong about myself, I am terribly sorry you're going through this and I hope that you are having the most beautiful life possible
Hi! I’m so sorry you’re going through this. I hope you can find the answers you need! Other than the life threatening emergencies I’ve lived through, my characteristics of VEDS have been with me all my life. I remember growing up with them ❤️
This video has touched me, it is just beautiful. I remember when I first discovered you on TH-cam, some years ago, I was realizing that my son was EDS (and me) and was having doubts about him possibly being VEDS. You explain everything so well, you are a great communicator, it is so easy to connect with you, I emphasize so much with you, that even though I mostly think my son may not be VEDS (which will be sure when we can test him), I love to see your videos and your stories. You give me so much quality information, I learn a lot from you, but most important, you inspire me so much, all you have achieved advocating for VEDS makes me feel proud of you even though I don’t personally know you. I think I will see this video anytime I need to find the strength to fight for what I think is right, to make a difference in the world, you are a real hero. It is very beautiful to see the community you have all built together. You have all my support and admiration.
Thank you so much, Laura. I appreciate your comment and support so much! And I’m so glad these videos have been helpful and impactful to you! You are so sweet and I’m so grateful for your kind words ❤️❤️❤️ I hope your son does not have VEDS, but if he does you have good support out here. All the love to you both. ❤️❤️❤️
Dear Katie, I just found out your video because I am researching about vEDS. My father died young of an untreated carotidian aneurysm and I have seen my health plumetting over the course of 3 years. Many years I've been denied compassion from doctors. And from my mom, which says it's all in my head. I've been misdiagnosed many times, even though I was diagnosing myself right. I have many of the minor symptoms of vEDS, but also I doubt myself because I don't have ALL the caracteristics. I feel illegitimate because of those symptoms I don't have (hypermobility, extra fine nose, hemophilia, aged hands, prominent eyes, all I don't have). My GP says she's not qualified, internal medicine specialist doesn't believe in EDS and only checked 3 points of hyperjoint mobility (which I don't particularly have, I'm flexible though). EDS specialist has 2.5 years waiting list. I will try to ask again my GP if she would order the genetic tests, but I doubt it. It's true, dyine at an age close to my father's was something I could imagine, but now its getting really real. I'm already 37 years old. But with the pain and everything, I am not jealous or have it hard to accept people talking about retirement. For once, I would be relieved. I have been diagnosed with Asperger's autism, and life have been really difficult. I also had a narcissistic mom and a brother that abused me when I was 12-13, right after my father's death. In the eyes of others, I might appear naive, which is strange, because they don't know me and what I've been through. I've lived my life to the best I could, and I've done extremely nice things. I have bad health, so what? I can't resent anybody for that, except those doctors who put my life in danger. But, my father was a bit like this: live your life from both ends at the same time. Have ambition, enjoy, be honest and joyful, be there for others. That's how you burn, tht's how you shine and never be forgotten by your loved ones. Kindness, happiness, smiles should be there everyday. Even if life is hard on my body, I'll always strike a smile, be polite. If that diagnosis is confirmed, I'll make sure to put all small stuff on the side to cre only about what will remain. Now is tough because I'm all into medical care, and I don't like how I bother everyone. I simply need answers. I send you many good floers and sunshine your way. I don't know hy I had to share this here with you, but I did, and it has been a long time since I've written something so cheerful :)
Hi Kaoru! I’m glad you found the channel and I hope the best for answers for you. Have you seen a geneticist or checked out The VEDS Movement? The nurse in the Help and Resource Center at the VEDS Movement can also give you a list of doctors who may be more familiar than what it sounds like you’ve experienced. Wishing you all the best wishes and thanks for sharing your experience with me ❤️
I found you because I was looking up about children getting diagnosed. I was diagnosed with hEDS and my four year old daughters pediatrician just referred her to the genetic specialist to check for hEDS as well. I haven’t gotten genetic testing yet but if they think we could have a different one based off of her I’ll get tested for sure.
I originally found your diagnosis video as soon as I suspected that I may have veds. I am still currently waiting for genetic testing but I check off almost all the symptom boxes for Veds except for maybe one other two.
Wishing you the best as you wait for your genetic testing. It’s a lot to go through and I hope you don’t have it. But mostly I wish you get the answers you need soon! ❤️
Always love your vids. I’m dx hEDs, but some nagging feeling has still led my mind to wonder if the genetics missed Veds. The translucent skin. My veins, my features etc etc either way I appreciate your videos and your honesty and caring.
Hi Katie, unfortunately a diagnosis of vEDS has been made in my family. With two premature losses so far. I have unfortunately been diagnosed as well. But one thing that stood out was your neck pain. I have terrible neck pain too and had it addressed with chiropractor etc. I assumed it was stress from work and as a result of two torn ligaments in my shoulder. But... Watching your video I'm a tad suspicious. How did you address it? Do you still have pain now? Thanks Dene.
Hi Dene. I’m so sorry you’ve had these diagnoses and losses in your family, and about your own diagnosis as well. The pain in my neck was a spontaneous, severe pain that took a while to go away and then it would keep coming back suddenly. Luckily when the dissection was diagnosed it had stabilized and the pain I experience now is more of a chronic musculoskeletal pain in my neck and shoulders. I have a pseudo aneurysm there where the dissection is and that hasn’t grown. They monitor that every year to make sure it stays small and stable. I think I talked about it in my other characteristics/diagnosis story video, but maybe this deserves a video of its own? It was incredibly painful. Sending you the best. ❤️
@@TranslucentOne thanks for your reply. I've had chronic pain on and off for a while. Certainly cluster headaches as a result, pain behind my eye that makes them water. I see the specialist centre here in the UK for the first time this Friday so will mention it then. ❤️
I've had the severe neck pain as well! I woke up one morning with it finally went to the chiropractor he did xrays and found nothing! It went on for about 2-3 weeks until it just disappeared one day. That was the second time I'd had it!
Thank you so much for this, I had dissections in both my carotid arteries Jan 2022, I wasn't taken seriously, I have been so ill, yet I was dismissed for 10 months, when finally ENT sent me for an angiogram. He even warned it was unlikely they'd find anything wrong! Within a week he called me and let me know, since then I have had test after test, I've told them it's Veds as I have had issues since I was a child, hypermobile, dislocations, easy bruised, stretch marks in unusual places etc.. your story almost mimics my own. However, I have just been referred to genetics from my rheumatologist. I am concerned for my son, he has the criteria for EDS.
I’m so sorry to hear you’ve been through all this and so glad you’ve been referred to genetics. Keeping my fingers crossed for you and your son!
I've come across your channel in my search for answers because I suspect I may have VEDS. I've never thought about something like this because I have another rare genetic condition but over the last 4 months my health has done a complete 180 and bothered me in ways my other condition never has. Not to mention all the medical gaslighting... My neuro suggested POTS which led me to EDS. I was wondering if you have been symptomatic all your life or if things seemingly 'flipped a switch' or were 'triggered' for you at some point? While I hope I'm wrong about myself, I am terribly sorry you're going through this and I hope that you are having the most beautiful life possible
Hi! I’m so sorry you’re going through this. I hope you can find the answers you need! Other than the life threatening emergencies I’ve lived through, my characteristics of VEDS have been with me all my life. I remember growing up with them ❤️
This video has touched me, it is just beautiful. I remember when I first discovered you on TH-cam, some years ago, I was realizing that my son was EDS (and me) and was having doubts about him possibly being VEDS. You explain everything so well, you are a great communicator, it is so easy to connect with you, I emphasize so much with you, that even though I mostly think my son may not be VEDS (which will be sure when we can test him), I love to see your videos and your stories.
You give me so much quality information, I learn a lot from you, but most important, you inspire me so much, all you have achieved advocating for VEDS makes me feel proud of you even though I don’t personally know you.
I think I will see this video anytime I need to find the strength to fight for what I think is right, to make a difference in the world, you are a real hero. It is very beautiful to see the community you have all built together. You have all my support and admiration.
Thank you so much, Laura. I appreciate your comment and support so much! And I’m so glad these videos have been helpful and impactful to you! You are so sweet and I’m so grateful for your kind words ❤️❤️❤️
I hope your son does not have VEDS, but if he does you have good support out here. All the love to you both. ❤️❤️❤️
@@TranslucentOne thank you very much. You are also so sweet ♥️♥️
I love you so much Katie 💖 YOU are a beautiful shining light to so many💖 :’)
❤️❤️❤️ I love you!
Dear Katie, I just found out your video because I am researching about vEDS. My father died young of an untreated carotidian aneurysm and I have seen my health plumetting over the course of 3 years. Many years I've been denied compassion from doctors. And from my mom, which says it's all in my head. I've been misdiagnosed many times, even though I was diagnosing myself right. I have many of the minor symptoms of vEDS, but also I doubt myself because I don't have ALL the caracteristics. I feel illegitimate because of those symptoms I don't have (hypermobility, extra fine nose, hemophilia, aged hands, prominent eyes, all I don't have). My GP says she's not qualified, internal medicine specialist doesn't believe in EDS and only checked 3 points of hyperjoint mobility (which I don't particularly have, I'm flexible though). EDS specialist has 2.5 years waiting list.
I will try to ask again my GP if she would order the genetic tests, but I doubt it.
It's true, dyine at an age close to my father's was something I could imagine, but now its getting really real. I'm already 37 years old. But with the pain and everything, I am not jealous or have it hard to accept people talking about retirement. For once, I would be relieved. I have been diagnosed with Asperger's autism, and life have been really difficult. I also had a narcissistic mom and a brother that abused me when I was 12-13, right after my father's death.
In the eyes of others, I might appear naive, which is strange, because they don't know me and what I've been through. I've lived my life to the best I could, and I've done extremely nice things.
I have bad health, so what? I can't resent anybody for that, except those doctors who put my life in danger. But, my father was a bit like this: live your life from both ends at the same time. Have ambition, enjoy, be honest and joyful, be there for others. That's how you burn, tht's how you shine and never be forgotten by your loved ones. Kindness, happiness, smiles should be there everyday.
Even if life is hard on my body, I'll always strike a smile, be polite.
If that diagnosis is confirmed, I'll make sure to put all small stuff on the side to cre only about what will remain. Now is tough because I'm all into medical care, and I don't like how I bother everyone. I simply need answers.
I send you many good floers and sunshine your way. I don't know hy I had to share this here with you, but I did, and it has been a long time since I've written something so cheerful :)
Hi Kaoru! I’m glad you found the channel and I hope the best for answers for you. Have you seen a geneticist or checked out The VEDS Movement? The nurse in the Help and Resource Center at the VEDS Movement can also give you a list of doctors who may be more familiar than what it sounds like you’ve experienced. Wishing you all the best wishes and thanks for sharing your experience with me ❤️
Thank you for this ❤️🦓
Thank you..
Thank you so much for sharing your story! I just started watching . Hope you are having a good day! ❤️
I found you because I was looking up about children getting diagnosed. I was diagnosed with hEDS and my four year old daughters pediatrician just referred her to the genetic specialist to check for hEDS as well. I haven’t gotten genetic testing yet but if they think we could have a different one based off of her I’ll get tested for sure.
Wishing you all the best for that genetics appointment for her! ❤️
Thank you.
Absolutely! All the love ❤️❤️❤️
I originally found your diagnosis video as soon as I suspected that I may have veds. I am still currently waiting for genetic testing but I check off almost all the symptom boxes for Veds except for maybe one other two.
Wishing you the best as you wait for your genetic testing. It’s a lot to go through and I hope you don’t have it. But mostly I wish you get the answers you need soon! ❤️
@@TranslucentOne thank you Katie ❤🙏🏽
Always love your vids. I’m dx hEDs, but some nagging feeling has still led my mind to wonder if the genetics missed Veds. The translucent skin. My veins, my features etc etc either way I appreciate your videos and your honesty and caring.
Thank you! ❤️ I hear the genetics tests are really accurate so I would hope they didn’t miss it for you! All the best.
Hi Katie, unfortunately a diagnosis of vEDS has been made in my family. With two premature losses so far. I have unfortunately been diagnosed as well. But one thing that stood out was your neck pain. I have terrible neck pain too and had it addressed with chiropractor etc. I assumed it was stress from work and as a result of two torn ligaments in my shoulder. But... Watching your video I'm a tad suspicious. How did you address it? Do you still have pain now? Thanks Dene.
Hi Dene. I’m so sorry you’ve had these diagnoses and losses in your family, and about your own diagnosis as well. The pain in my neck was a spontaneous, severe pain that took a while to go away and then it would keep coming back suddenly. Luckily when the dissection was diagnosed it had stabilized and the pain I experience now is more of a chronic musculoskeletal pain in my neck and shoulders. I have a pseudo aneurysm there where the dissection is and that hasn’t grown. They monitor that every year to make sure it stays small and stable.
I think I talked about it in my other characteristics/diagnosis story video, but maybe this deserves a video of its own? It was incredibly painful. Sending you the best. ❤️
@@TranslucentOne thanks for your reply. I've had chronic pain on and off for a while. Certainly cluster headaches as a result, pain behind my eye that makes them water. I see the specialist centre here in the UK for the first time this Friday so will mention it then. ❤️
I hope the appointment goes well and you get some answers!
I've had the severe neck pain as well! I woke up one morning with it finally went to the chiropractor he did xrays and found nothing! It went on for about 2-3 weeks until it just disappeared one day. That was the second time I'd had it!