I have cEDS with vascular features. I use the softest brushes I can find and my gums still recede. I've got a couple spots in the back that are so worn down that it feels like a bad cavity when sweets hits it. When I have my teeth cleaned, I nearly come out of my chair when they hit it with the water it hurts so badly. My gums are fragile but not as fragile as yours. I get the blood blisters too for no apparent reason. I love your spunk and positive attitude. You're an asset to the community, thanks for your videos.
Katie you make feel so good bc what u say is so relatable I m a dental student and my senior told me I have this thin gingiva tissue phenotype and I also have acrogeria and also some other things . Its highly likely that I am ever gonna being diagnosed because I live in very poor country
Hi there. What country are you in? Fightveds.org coordinates testing, sometimes outside of the US. Companies like Color also operate in many different countries. Wishing the best for you ❤️
Hi Katie, had same problem due to Veds, had deep gum debridement , over few months, and improvement is massive. I use the tiny interdental brushes every day, and its keeping gums in good condition. Why this disease has so many side effects is hard, but between my teeth and feet , I keep on trying to do my best. Good luck, made me laugh about blood blisters, thought I was only one. Lol.
Lol those blood blisters are so frustrating! Once they pop it’s harder to talk for a couple days because it’s so sore. But I guess relatively small potatoes ❤️
My doctors suspect I have EDS. I'm just waiting on a genetics appointment. I don't have recession (at least I don't think) but I've had my gums tear and bruise simply from wearing my retainers. Just the pressure of my retainers tore my gums. It was so spooky.
@@TranslucentOne neither my PT or my rheum pointed to any specific type. Just EDS generally. Looking at the types, I have a lot of features/symptoms that point towards the classical and Classical-Like types but I also have a few vascular features. But, then again, none of this is for me to decide and I just kinda have to wait. Thanks for the support tho!
I also get the giant blood blisters on my tongue. I find it's either from very spicy foods or coarse foods with sharp edges like chips or toast. They're so bad I have to pop them just so I can speak and function normally. The aftermath is horrible, takes days to heal. The first time it happened I was at a restaurant with some friends and I was having eating Shrimp Fra Diavolo. My tongue became very swollen and painful for no apparent reason. So I after saying to my friends "I think something is wrong" I opened my mouth and there was a total look of horror on their faces. I was diagnosed with vEDS in 2008.
I try to pop them immediately too! I find my tongue, ear and jaw on the side it was on is very sore for a couple of days. It definitely affects my ability to talk easily the day after I have one.
I have hEDS, but with a lot more skin involvement than most (although I more and more want to get my TNXB gene tested, which a geneticist mentioned in passing at one point but never did, because I fit many of the clEDS traits) and I swear my jaw almost dropped as you kept talking. I have some degree of gum recession (my dad though has pretty bad gum recession and has since he was a lot younger). My dentist a few years ago had me switch to an extra soft toothbrush because of it, plus the fact that I would bleed when brushing sometimes. I also have a similar issue with blisters on my tongue, especially with rough or acidic foods! It's made worse by the fact that my mouth is quite small so my tongue is constantly being scraped, torn, or caught in my teeth. I have scarring on the sides of my mouth and my tongue from my teeth just due to my mouth size. My mouth (and most of me tbh) also bleeds super easily (so the fact that I sometimes chew the inside of my mouth as a nervous habit doesn't work great for me). I don't think I've ever heard anyone talk about the blisters from certain foods before!
Katie Wright I definitely agree. Same here, I too have vEDS but with Classical tendencies as well. Losing teeth is definitely a scary thing. I’m only 27, there’s no way I should be losing teeth yet haha
I am 31. The research that has been published estimates 50% of people will live to 51, but that number may be skewed because so many people are undiagnosed. The VEDS Movement is a good site for learning more about VEDS. TheVEDSMovement.org. Best wishes for your family and your cousin ❤️
I have cEDS with vascular features. I use the softest brushes I can find and my gums still recede. I've got a couple spots in the back that are so worn down that it feels like a bad cavity when sweets hits it. When I have my teeth cleaned, I nearly come out of my chair when they hit it with the water it hurts so badly. My gums are fragile but not as fragile as yours. I get the blood blisters too for no apparent reason. I love your spunk and positive attitude. You're an asset to the community, thanks for your videos.
Thank you Mikell! ❤️
Katie you make feel so good bc what u say is so relatable
I m a dental student and my senior told me I have this thin gingiva tissue phenotype and I also have acrogeria and also some other things . Its highly likely that I am ever gonna being diagnosed because I live in very poor country
Hi there. What country are you in? Fightveds.org coordinates testing, sometimes outside of the US. Companies like Color also operate in many different countries. Wishing the best for you ❤️
Hi Katie, had same problem due to Veds, had deep gum debridement , over few months, and improvement is massive. I use the tiny interdental brushes every day, and its keeping gums in good condition.
Why this disease has so many side effects is hard, but between my teeth and feet , I keep on trying to do my best. Good luck, made me laugh about blood blisters, thought I was only one. Lol.
Lol those blood blisters are so frustrating! Once they pop it’s harder to talk for a couple days because it’s so sore. But I guess relatively small potatoes ❤️
I also have Melkersson rosenthol syndrome. I always thought it was from that for me.
I will look that up!
My doctors suspect I have EDS. I'm just waiting on a genetics appointment. I don't have recession (at least I don't think) but I've had my gums tear and bruise simply from wearing my retainers. Just the pressure of my retainers tore my gums. It was so spooky.
What type of EDS do they suspect? I’m sorry you are going through this! I hope the genetics appointment goes well and leads to answers for you!
@@TranslucentOne neither my PT or my rheum pointed to any specific type. Just EDS generally. Looking at the types, I have a lot of features/symptoms that point towards the classical and Classical-Like types but I also have a few vascular features. But, then again, none of this is for me to decide and I just kinda have to wait. Thanks for the support tho!
I hope the appointment goes well! There’s a supportive community out here if you do end up diagnosed with a form of EDS. Good luck! :)
I also get the giant blood blisters on my tongue. I find it's either from very spicy foods or coarse foods with sharp edges like chips or toast. They're so bad I have to pop them just so I can speak and function normally. The aftermath is horrible, takes days to heal. The first time it happened I was at a restaurant with some friends and I was having eating Shrimp Fra Diavolo. My tongue became very swollen and painful for no apparent reason. So I after saying to my friends "I think something is wrong" I opened my mouth and there was a total look of horror on their faces. I was diagnosed with vEDS in 2008.
I try to pop them immediately too! I find my tongue, ear and jaw on the side it was on is very sore for a couple of days. It definitely affects my ability to talk easily the day after I have one.
I have hEDS, but with a lot more skin involvement than most (although I more and more want to get my TNXB gene tested, which a geneticist mentioned in passing at one point but never did, because I fit many of the clEDS traits) and I swear my jaw almost dropped as you kept talking. I have some degree of gum recession (my dad though has pretty bad gum recession and has since he was a lot younger). My dentist a few years ago had me switch to an extra soft toothbrush because of it, plus the fact that I would bleed when brushing sometimes. I also have a similar issue with blisters on my tongue, especially with rough or acidic foods! It's made worse by the fact that my mouth is quite small so my tongue is constantly being scraped, torn, or caught in my teeth. I have scarring on the sides of my mouth and my tongue from my teeth just due to my mouth size. My mouth (and most of me tbh) also bleeds super easily (so the fact that I sometimes chew the inside of my mouth as a nervous habit doesn't work great for me). I don't think I've ever heard anyone talk about the blisters from certain foods before!
I’m glad this video was so relatable to you! Such odd things! I also use an extra soft toothbrush. :)
Also I hear you on chewing the inside of your mouth. I don’t do that, but I pick my lip. Also not a great combo! Ha.
Hey would you mind sharing the WA Dentist name that was familiar with this/ connective tissue disorder? Thanks
Gosh it’s been a few years but I think it was Dr. Fisher in Olympia area?
I have this issue desperately as well.
I’m sorry you have this too! I used to be so self conscious about it. But now I’m just so careful about it getting worse. Don’t want to lose my teeth!
Katie Wright I definitely agree. Same here, I too have vEDS but with Classical tendencies as well. Losing teeth is definitely a scary thing. I’m only 27, there’s no way I should be losing teeth yet haha
@@MetroStationluver18 meanwhile I’m still 22yo. I’m I’m so scared
Every video I see me in you. I’m 54. So there’s that…
How old are you and what's your life expectancy? My cousin has what you have and I'm trying to do research
I am 31. The research that has been published estimates 50% of people will live to 51, but that number may be skewed because so many people are undiagnosed. The VEDS Movement is a good site for learning more about VEDS. TheVEDSMovement.org. Best wishes for your family and your cousin ❤️
Same
Hi there... did you end up having a genetic mutation confirmed? COL3A1 or whatever it is?
Yep!
I have a pathogenic col3a1 mutation
Im in the process of needing all my teeth removed i have veds its pretty lame♡
Aw man I’m so sorry! Thats a huge bummer. ❤️