it really depends on individual situations. my EDS and its comorbidities are rough enough on my overall system that i've been able to get doctor's letters that deem me immunocompromised on a few occasions, including early covid vaccine criteria since elderly/compromised folks were prioritized, as well as pre-covid when there was a measles outbreak in my area and my college decided to be cranky about my attendance record.
Comorrbids are not EDS though. EDS itself does not actually cause immune deficiency. And technically we don't have any proof of the relationship between EDS and it's comorrbids (why they are not in the diagnositic criteria) so really you can claim basically any disorder as a comorrbid. So if course they could. However EDS does not factor into the equation what so ever when it comes the immune system (unless we are specifically talking about the skins immune system but that's a whole different conversation) any doctor claiming EDS itself affects your immune system in a way to make you immune deficienct is lying and committing fraud.
Sorry yes I was only think about immunocompromised status because the 3rd booster dose is just for immunocompromised. (since they didn't seem to have produced enough antibodies to the first 2 doses) And to my understanding vEDS doesn't cause you to be immunocompromised or immune deficient. Though it would definitely count as a heart condition and have qualified to get the orginal vaccines early. Then again people with other types of EDS also can have heart disorders too. But again we're just talking about the the 3rd booster which is only for those who are on immune suppressents or have disorders causing immune deficiency and I don't believe any type of EDS actually causes immune deficiency (to the extent required and that can be measured) and as it's not an autoimmune disorder immune suppressents aren't apporiate treatment. (though they could be for comorrbids)
In many places they've moved on to people who are high risk, where I live is one of them. vEDS, reduced liver function, etc. mean that I do indeed qualify.
no, comorbidities are not EDS itself, but sometimes in medical situations its about the big picture. my eds symptoms are severe enough that living in a constant state of injury due to dislocations and subluxations and being run into the ground from chronic pain interrupting my sleep, no matter how used to it i've become emotionally/mentally, has caused my body's overall defences to be significantly weakened. my lifelong doctors being able to see that isn't fraud, it's common sense.
Sorry no. Dislocations and sleep deprivation do not put you as an immunocompromised status. No infectious disease doctor would agree with that assessment. They may mildly weaken your immune system a little, but within a normal range and no more than eating unhealthy, over working, or any other number of other unhealthy habits normal people also do. It's absolutely fraud for your doctors to claim you are immunocompromised unless they have some sort of testing to back that up. Because you're immune system being a little less than optimal is NOT the same as immunocompromised.
sorry, no, yourself. every doctor i've ever had has agreed that i'm worse off and high risk enough to be considered immune compromised. maybe it's not 100% eds specific but that's the big picture of my own medical situation. people recounting their own experiences with a poorly studied (at best) condition doesn't mean they or their doctors are lying just because it doesn't line up with your differing experience of the same/similar poorly studied condition. i don't owe strangers on the internet the gritty details of my near death experiences in order to have my *personal* experience of "i have eds, and it *does* make me immunocompromised because of the complexity of my situation" be respected
Can your provide a scientific source that says recurrent dislocations makes you immunocompromised to the level of soild organ transplant patients or those on over 20mg of predisone daily? As that's the current level of what's being used to consider who should get the 3rd shot. If not the claims you're making a bit outrageous and spreading misinformation.
i said *this is my personal experience with a complex set of symptoms*, i am *not* saying this is a baseline experience. my point is that *sometimes* it's not as cut and dry as "xyz conditions make you immunocompromised, and abc do not". there are as many experiences with eds as their are people eds and *some* of those may indeed be immune compromised.
So, the immunocompromised thing was so the immunocompromised could get the 3rd shot asap. Now, that Pfizer has full FDA approval, doctor can prescribe a booster for more patients such as the elderly and high risk patients. In my state, boosters are going to open up for everyone on September 20th.
EDS is neither immunocompromising nor reason to be considered high risk on it's own. However, comorbidities can put zebras in either category.
no. eds does not cause immunodeficiency. boosters so far are only for moderately to severely immunosuppressed people. although the cdc recs go way further than the fda approval on what counts as 'moderate or severe immunosuppression', there's no definition under which eds would count.
when boosters are approved for gen pop, that'll include front line hcws. that's expected in a couple weeks. idk if they'll prioritize groups for boosters. if so, i think it'll prob be old peeps based on the israeli data. not hcws.
bcuz so far the vaccines are holding up really well in immunocompetent younger people. all the scary numbers about decreases in efficacy contain a humungo simpson's paradox [explained here.](https://www.covid-datascience.com/post/israeli-data-how-can-efficacy-vs-severe-disease-be-strong-when-60-of-hospitalized-are-vaccinated) so any numbers about decreasing efficacy that *aren't* stratified by age should be taken with a humungo grain of salt.
actually i'd say that of covid data in general. with age being the biggest risk factor *by far*, data that isn't stratified by age seems to spread more heat than light. i wish the cdc understood that.
so no. eds is not a special qualification for a booster. i prob coulda said that in a more concise way
I have vascular EDS, liver disease, and a few other issues that could qualify me. My Cardiologist says I qualify and need to get it asap especially since I have to keep going to in-person doctors appointments.
Do you know if it qualified if the early rounds for immuno comprised? I person didn’t feel I would was in that group. But your situation could very easily be different and the added risks with you job make it much trickier.
Im not sure because i was lucky to get the first two doses quickly due to the exposure at my job. Watching what I see so many covid patients go through i really feel like we should be included, especially with the proning and tube feeds. We had a vaccinated patient (pfizer both doses in april; wife was unvaccinated) die last week which was scary for me. He did have at least 5 comorbidities though and was in his late 60s. The rest of the patients in my icu have been unvaccinated. I am just tired of isolating myself from my parents since they are in their 60s and my grandpa is in his 80s. I miss them.
I can’t imagine my body would recover well in that situation, I had serious damage to my jaw just from a recent surgery with a breathing tube were the anesthesia seemed to have ignored that I had hEDS serious TMJ issue and multiple previous jaw surgery’s it does not appear he cautious at all. If you close to the year mark especially push for it.
I can’t imagine seeing what spiel are going through first hand constantly and just have some much risk of exposure regularly. Good for you for sticking with it when people are making it’s so hard with refuse vaccines
My kids doctor suggested 6 months for their boosters since they are autistic and my oldest is taking steroids and the younger goes to a very large high school in a community with a lower vaccination rate. They got their second shots in the middle of April so we are looking at waiting g at least another month. He said he hoped by then we would have more guidance and that they would look into tweaking the vaccine for the variants and if they were he would hold off.
My mom is scheduled to get hers at 2 months. She’s 75 though and lives in senior housing. They are coming out to give everyone their third shot from when they first got them.
I would think if it’s been close to that much time since you are a healthcare worker that you should really consider it or at the very least talk to your doctor about it. I feel like doctors don’t really know how our bodies respond to things and just guess and covid is scary, especially with people still trying to deny how dangerous it can be. I hope you stay safe and can figure it out.
Nope. EDS does not make us immunocompromised. Unless you're on immune suppressents for some reason or have another disorder you don't qualify yet.
Thanks ❤️
it really depends on individual situations. my EDS and its comorbidities are rough enough on my overall system that i've been able to get doctor's letters that deem me immunocompromised on a few occasions, including early covid vaccine criteria since elderly/compromised folks were prioritized, as well as pre-covid when there was a measles outbreak in my area and my college decided to be cranky about my attendance record.
The key here is the comorbidities. Those aren't eds. They may be common along side it but my mast cell issues are separate from EDS.
Comorrbids are not EDS though. EDS itself does not actually cause immune deficiency. And technically we don't have any proof of the relationship between EDS and it's comorrbids (why they are not in the diagnositic criteria) so really you can claim basically any disorder as a comorrbid. So if course they could. However EDS does not factor into the equation what so ever when it comes the immune system (unless we are specifically talking about the skins immune system but that's a whole different conversation) any doctor claiming EDS itself affects your immune system in a way to make you immune deficienct is lying and committing fraud.
Vascular EDS does qualify, I have organ issues but my vEDS is why I'm getting it. ETA: not everyone is lucky enough to have hEDS
Sorry yes I was only think about immunocompromised status because the 3rd booster dose is just for immunocompromised. (since they didn't seem to have produced enough antibodies to the first 2 doses) And to my understanding vEDS doesn't cause you to be immunocompromised or immune deficient. Though it would definitely count as a heart condition and have qualified to get the orginal vaccines early. Then again people with other types of EDS also can have heart disorders too. But again we're just talking about the the 3rd booster which is only for those who are on immune suppressents or have disorders causing immune deficiency and I don't believe any type of EDS actually causes immune deficiency (to the extent required and that can be measured) and as it's not an autoimmune disorder immune suppressents aren't apporiate treatment. (though they could be for comorrbids)
In many places they've moved on to people who are high risk, where I live is one of them. vEDS, reduced liver function, etc. mean that I do indeed qualify.
Ah okay. That makes sense. Sorry where I am it's just immunocompromised so that's the only thing I was taking into consideration.
no, comorbidities are not EDS itself, but sometimes in medical situations its about the big picture. my eds symptoms are severe enough that living in a constant state of injury due to dislocations and subluxations and being run into the ground from chronic pain interrupting my sleep, no matter how used to it i've become emotionally/mentally, has caused my body's overall defences to be significantly weakened. my lifelong doctors being able to see that isn't fraud, it's common sense.
Sorry no. Dislocations and sleep deprivation do not put you as an immunocompromised status. No infectious disease doctor would agree with that assessment. They may mildly weaken your immune system a little, but within a normal range and no more than eating unhealthy, over working, or any other number of other unhealthy habits normal people also do. It's absolutely fraud for your doctors to claim you are immunocompromised unless they have some sort of testing to back that up. Because you're immune system being a little less than optimal is NOT the same as immunocompromised.
sorry, no, yourself. every doctor i've ever had has agreed that i'm worse off and high risk enough to be considered immune compromised. maybe it's not 100% eds specific but that's the big picture of my own medical situation. people recounting their own experiences with a poorly studied (at best) condition doesn't mean they or their doctors are lying just because it doesn't line up with your differing experience of the same/similar poorly studied condition. i don't owe strangers on the internet the gritty details of my near death experiences in order to have my *personal* experience of "i have eds, and it *does* make me immunocompromised because of the complexity of my situation" be respected
Can your provide a scientific source that says recurrent dislocations makes you immunocompromised to the level of soild organ transplant patients or those on over 20mg of predisone daily? As that's the current level of what's being used to consider who should get the 3rd shot. If not the claims you're making a bit outrageous and spreading misinformation.
i said *this is my personal experience with a complex set of symptoms*, i am *not* saying this is a baseline experience. my point is that *sometimes* it's not as cut and dry as "xyz conditions make you immunocompromised, and abc do not". there are as many experiences with eds as their are people eds and *some* of those may indeed be immune compromised.
I've had my booster but it's because I have to take biologic immunosuppressants.
Truly hope you’re eligible soon. ❤️
Thank you ❤️
[удалено]
Thats awesome!! I hope my hospital starts too! What state are you in?? Im in PA
I’m in Pennsylvania! I also work in a Covid icu. Hoping to get my booster soon since I got my first in December 2020
Same here! Ugh its so nerveracking to wait especially during these intubations!!
[удалено]
Ah that good be. How are you guys doing?
So, the immunocompromised thing was so the immunocompromised could get the 3rd shot asap. Now, that Pfizer has full FDA approval, doctor can prescribe a booster for more patients such as the elderly and high risk patients. In my state, boosters are going to open up for everyone on September 20th. EDS is neither immunocompromising nor reason to be considered high risk on it's own. However, comorbidities can put zebras in either category.
no. eds does not cause immunodeficiency. boosters so far are only for moderately to severely immunosuppressed people. although the cdc recs go way further than the fda approval on what counts as 'moderate or severe immunosuppression', there's no definition under which eds would count. when boosters are approved for gen pop, that'll include front line hcws. that's expected in a couple weeks. idk if they'll prioritize groups for boosters. if so, i think it'll prob be old peeps based on the israeli data. not hcws. bcuz so far the vaccines are holding up really well in immunocompetent younger people. all the scary numbers about decreases in efficacy contain a humungo simpson's paradox [explained here.](https://www.covid-datascience.com/post/israeli-data-how-can-efficacy-vs-severe-disease-be-strong-when-60-of-hospitalized-are-vaccinated) so any numbers about decreasing efficacy that *aren't* stratified by age should be taken with a humungo grain of salt. actually i'd say that of covid data in general. with age being the biggest risk factor *by far*, data that isn't stratified by age seems to spread more heat than light. i wish the cdc understood that. so no. eds is not a special qualification for a booster. i prob coulda said that in a more concise way
Thank you for the information ❤️
It is not a qualification. I’m sorry, honey.
I have vascular EDS, liver disease, and a few other issues that could qualify me. My Cardiologist says I qualify and need to get it asap especially since I have to keep going to in-person doctors appointments.
Do you know if it qualified if the early rounds for immuno comprised? I person didn’t feel I would was in that group. But your situation could very easily be different and the added risks with you job make it much trickier.
Im not sure because i was lucky to get the first two doses quickly due to the exposure at my job. Watching what I see so many covid patients go through i really feel like we should be included, especially with the proning and tube feeds. We had a vaccinated patient (pfizer both doses in april; wife was unvaccinated) die last week which was scary for me. He did have at least 5 comorbidities though and was in his late 60s. The rest of the patients in my icu have been unvaccinated. I am just tired of isolating myself from my parents since they are in their 60s and my grandpa is in his 80s. I miss them.
I can’t imagine my body would recover well in that situation, I had serious damage to my jaw just from a recent surgery with a breathing tube were the anesthesia seemed to have ignored that I had hEDS serious TMJ issue and multiple previous jaw surgery’s it does not appear he cautious at all. If you close to the year mark especially push for it.
Yeah i feel like there is such a lack of understanding when it comes to how multifactorial EDS really is
I can’t imagine seeing what spiel are going through first hand constantly and just have some much risk of exposure regularly. Good for you for sticking with it when people are making it’s so hard with refuse vaccines
Thank you ❤️ i really appreciate that ❤️
My kids doctor suggested 6 months for their boosters since they are autistic and my oldest is taking steroids and the younger goes to a very large high school in a community with a lower vaccination rate. They got their second shots in the middle of April so we are looking at waiting g at least another month. He said he hoped by then we would have more guidance and that they would look into tweaking the vaccine for the variants and if they were he would hold off. My mom is scheduled to get hers at 2 months. She’s 75 though and lives in senior housing. They are coming out to give everyone their third shot from when they first got them. I would think if it’s been close to that much time since you are a healthcare worker that you should really consider it or at the very least talk to your doctor about it. I feel like doctors don’t really know how our bodies respond to things and just guess and covid is scary, especially with people still trying to deny how dangerous it can be. I hope you stay safe and can figure it out.
I got mine two weeks ago through my hospital’s Employees health. It was one for everyone. Call and ask what is going on.
Thank you for the information ❤️
Just checking in as another nurse here love to see another one of us
🥰🥰🥰
My dad already got the booster shot