Thank you for posting that. I just had my symptoms start to get worse this august and i greatly appreciate it. Also, for others with the severe types (like myself) the MRNA vaccine is projected to be complete in the united states in approx 5 years and will be covered by major carriers*. *information is subject to change
Sounds like she has the Vascular subtype of EDS , her neighbor who passed away. I have Classical EDS. And it causes me High pain levels, I have where I have to go use the bathroom quite frequently because I have to “ Tinkle “ more frequently. I am getting to the point where I need a shower chair because I have Dysautonomia. She sounds like she has the hEDS subtype.
Just to clarify for anyone who searched 'Ehlers Danlos Syndrome' and stumbled on to this video - I don't know what type of EDS (there are 13 subtypes) this woman has as it's not specified, but for the vast, vast majority, the prognosis is absolutely not equivalent to Locked-in Syndrome or anything even close to on that level at all. Most people with hEDS (the most common subtype) will live long, full lives, albeit with varying amounts of chronic pain, fatigue and other symptoms, but will maintain most basic functions just fine. Some of us who have it more severely may end up struggling with mobility, independence, swallowing, bladder issues etc to that level, but there is no guarantee of that and it is not the norm for this diagnosis. I wish that this had been clarified in this video. If you or someone you know has an EDS diagnosis, do not expect this outcome or fear for the worst; everyone's experience with this condition will vary greatly.
I Have hEDS with vascular involvement. People do need to be very aware of the vascular rupture, blood clot, and organ rupture risks in hEDS. Most people I know in my EDS support network are on the far more severe side of symptoms. The average lifespan for anyone with vascular involvement is age forty-eight. With education and awareness on aortic dissection, and other similar life-threatening vascular events, as well as fall-related risks (the number one of complications leading to death in disabled and also older adults), I believe we can see that statistic change to a much later age. Awareness of the earliest symptoms of vascular emergencies and immediate intervention and treatment options will be helpful in ending the previous trend of early death rates.
The majority of people who have it are women, like myself. Men that have it often do not live past toddlers or even less. They are more likely to live if they have the hypermobility and elasticity subtype which is still painful. I will say that this disease affects everything. From feeding tubes to repairing ligaments through surgery. Please remember that although it is a disease with a lot of variance it should be taken seriously. I strongly believe that if i had been correctly diagnosed at 13 instead of 17 my pain would be far easier to mitigate. If you have questions for someone with a similar severe type of this disease feel free to comment here .
Just because you know these magic unicorn people with EDS who are functioning "well" doesn't mean you are correct about the quality of life for those suffering day in and day out- which represents the overwhelming majority of EDS sufferers, and yes, this includes the hyper mobile type. No one enjoys constant pain. No one can thrive like that. No one should have to. We should have choice.
For everyone who replied to my previous comment - yes, I'm aware it can be quite severe and even hEDS can have vascular involvement. I am myself a woman, I have hEDS with vascular involvement, and am severely debilitated by my symptoms. I just wanted to make it clear to anyone who had happened upon this video and who had a loved one with EDS or they themselves suspect they may have it or have been recently diagnosed, that the condition varies GREATLY amongst patients. The video did not make it clear that this woman had vascular EDS or that EDS is a condition with variable symptoms and severity; I simply wanted to make that clear to people. I empathize very much with people who, like myself, are disabled by this condition and who live in pain every day from it. I know a number of people with hEDS who do not suffer to this extent, and I wouldn't want to send someone into a panic that this is necessarily a life-ending or even always a life-altering diagnosis, because it's not. I am personally against assisted suicide and would not wish for someone to consider this 'option' without full understanding of their condition and it's variabilities, which is why I felt it worth commenting. I agree 100% with @chrysallis2735 that education is key, and there is not enough education or even medical information out there about this condition. I hope that research continues and that we are all the last generation of EDS patients to suffer without appropriate understanding and treatment for this disease.
Thank you for posting that. I just had my symptoms start to get worse this august and i greatly appreciate it. Also, for others with the severe types (like myself) the MRNA vaccine is projected to be complete in the united states in approx 5 years and will be covered by major carriers*.
*information is subject to change
Sounds like she has the Vascular subtype of EDS , her neighbor who passed away. I have Classical EDS. And it causes me High pain levels, I have where I have to go use the bathroom quite frequently because I have to “ Tinkle “ more frequently. I am getting to the point where I need a shower chair because I have Dysautonomia. She sounds like she has the hEDS subtype.
Just to clarify for anyone who searched 'Ehlers Danlos Syndrome' and stumbled on to this video - I don't know what type of EDS (there are 13 subtypes) this woman has as it's not specified, but for the vast, vast majority, the prognosis is absolutely not equivalent to Locked-in Syndrome or anything even close to on that level at all. Most people with hEDS (the most common subtype) will live long, full lives, albeit with varying amounts of chronic pain, fatigue and other symptoms, but will maintain most basic functions just fine. Some of us who have it more severely may end up struggling with mobility, independence, swallowing, bladder issues etc to that level, but there is no guarantee of that and it is not the norm for this diagnosis. I wish that this had been clarified in this video. If you or someone you know has an EDS diagnosis, do not expect this outcome or fear for the worst; everyone's experience with this condition will vary greatly.
I Have hEDS with vascular involvement.
People do need to be very aware of the vascular rupture, blood clot, and organ rupture risks in hEDS.
Most people I know in my EDS support network are on the far more severe side of symptoms. The average lifespan for anyone with vascular involvement is age forty-eight.
With education and awareness on aortic dissection, and other similar life-threatening vascular events, as well as fall-related risks (the number one of complications leading to death in disabled and also older adults), I believe we can see that statistic change to a much later age.
Awareness of the earliest symptoms of vascular emergencies and immediate intervention and treatment options will be helpful in ending the previous trend of early death rates.
The majority of people who have it are women, like myself. Men that have it often do not live past toddlers or even less. They are more likely to live if they have the hypermobility and elasticity subtype which is still painful. I will say that this disease affects everything. From feeding tubes to repairing ligaments through surgery. Please remember that although it is a disease with a lot of variance it should be taken seriously. I strongly believe that if i had been correctly diagnosed at 13 instead of 17 my pain would be far easier to mitigate. If you have questions for someone with a similar severe type of this disease feel free to comment here .
Just because you know these magic unicorn people with EDS who are functioning "well" doesn't mean you are correct about the quality of life for those suffering day in and day out- which represents the overwhelming majority of EDS sufferers, and yes, this includes the hyper mobile type. No one enjoys constant pain. No one can thrive like that. No one should have to. We should have choice.
Kinda downplaying the condition, there
For everyone who replied to my previous comment - yes, I'm aware it can be quite severe and even hEDS can have vascular involvement. I am myself a woman, I have hEDS with vascular involvement, and am severely debilitated by my symptoms. I just wanted to make it clear to anyone who had happened upon this video and who had a loved one with EDS or they themselves suspect they may have it or have been recently diagnosed, that the condition varies GREATLY amongst patients.
The video did not make it clear that this woman had vascular EDS or that EDS is a condition with variable symptoms and severity; I simply wanted to make that clear to people. I empathize very much with people who, like myself, are disabled by this condition and who live in pain every day from it. I know a number of people with hEDS who do not suffer to this extent, and I wouldn't want to send someone into a panic that this is necessarily a life-ending or even always a life-altering diagnosis, because it's not. I am personally against assisted suicide and would not wish for someone to consider this 'option' without full understanding of their condition and it's variabilities, which is why I felt it worth commenting.
I agree 100% with @chrysallis2735 that education is key, and there is not enough education or even medical information out there about this condition. I hope that research continues and that we are all the last generation of EDS patients to suffer without appropriate understanding and treatment for this disease.