EDS here with dental issues. everything got better with water flossing. + brushing and flossing. Peroxide diluted With water and then with baking soda solution following got rid of periodontal crisis. Now I use baking soda and water with brush and oral water flosser.
I have vascular and I had tooth crowding, with 4 extra deformed adult teeth that had to be pulled before I had braces. I was 10 years old. Took my first dentist over 2.5 hours to pull one tooth because one root was hooked and I was in immense pain during the procedure. My parents changed dentists and they gave me nitrous oxide during the extraction with no problem. I never had issues with tooth decay other than pitting in my bottom rear molars that were filled when I was still a child.
VEDS definitely is affected; I have had gum surgery to graft new tissue onto my gums in four areas to help prevent further gingivitis at age 24, I know of another young woman with the same issue. I have 4 implants and had to have cadaver bone implanted into my mouth and heal for almost a year before putting the bone implant/graft. I only lost one implant, but the dentist who did it did not put a long enough post. I had to go to an oral surgeon for my successful implants(for now successful).
My families cases would be helpful. I am 50, my sons are now 20 and 23. No email was listed. I am aware of these things, but also want to question as far as the rapid collagen deterioration being triggered by illnesses. I have know and suspected it for some time now, because of my sons and myself. Covid-19 has thrust this into light as well. I suspect a triggered collagen myositis in us, with perhaps a predisposition in EDS, but my youngest is the only one formally dx. His story is incredible in its own rights. Has anyone asked about illnesses 6 or less months prior to the rapid destruction of their teeth. Our cases, including my youngest who had covid has dentistry involvement. I have records on us. I had no cavities until my 20's (same with an aunt of mine, who's mouth also went haywire suddenly). There were toxic and immune inflammation triggers that have flared, stopped, and flared again, over the last 20 - 30 yrs with my family. My father and brother also had dentures early. My 23 yr old, was just told this fall, all teeth need to be removed and he is wanting implants. My biggest fear is that since our family gets these illness flares, that cause rapid collagen deteriorations , that his implants will fail. My youngest and our cases, show that the inflammation can be calmed if not stopped from being destructive. I am talking representative, not just in dentistry but also our joints and more. At this point, I am willing to donate all of my and my sons records to at least get them helped and to help so many others ultimately. Even the anesthesia applies here. My youngest did not get the sort with epinephrine because of heart issues his entire life. BUT the heart meds he was on, added to his young teeth being awful. I had an extra tooth, but a missing wisdom tooth. He had 1 baby tooth that had to be removed because it just would not fall out - not the root but very long enamel. If nothing else, I am and OCD sort of record keeper, mostly because of how complex my and my sons cases medically have been since yr 2000. The lack of appropriate help, honestly, just medicine slow and behind. I hoped one day, dots could be connected, and yet even though I connected some for my youngest in his teen years, the most profound dot connections came after, because he had an accidental remission of all things, and a relapse. And yes, I mean in HEDS symptoms among other things. What is incredible is from our fall 2017 illness trigger, how horrifically that has impacted all 3 of our mouths, to this day. We were not doing that bad before. 30 yrs age difference between myself and the youngest. We all broke teeth within months of each other too. Secondary to initial illness trigger.
Not ONLY DO I HAVE hypwrmobility, but I have vascular with long roots, & SEVERE decay... Another dentist said he was surprised I still had teeth with my condition being a severe as it is. Unfortunately, Im losing them quicker than I can replace. I pray I can even get implants and have no issues after
I'm cEDS. As far as I know every generation of my family has started losing teeth at a young age. I lost my first adult tooth in my twenties I'm very close to losing all of my teeth in my thirties. :(
My mom had all of her teeth out after the birth of my older brother she was 19. My Grandma lost her teeth in her early 20s. I've had issues with my teeth my whole life. My baby teeth all needed fillings. All my teeth have fillings besides 1 but that's starting to have issues too. I have osteopenia. That started in my 20s. Unfortunately until my most recent dentist all my other dentists just treated me like I was ignorant and causing the issues myself by never brushing or flossing. Dental care has always been a nightmare for me as numbing medication processes differently in my system. Even the ones that are recommended for people with EDS don't work properly. Laughing gas finally got me to not be terrified of the dentist only took me 34 years.
So.... she says she has never seen a patient with other types of EDS, but since there are no papers... then she can say periodontitis is not more prevalent in other EDS types. How about trying to actually see other types of EDS patients? Before making any statements?
I have cEDS and I'm also a redhead. I have always thought that visiting the dentist and having freezing that doesn't take was related to being a redhead not being related to my EDS.
I have Hypermobile EDS, and I have enamel hypoplasia on all my teeth. Looks like a ridge on ALL my lower and upper teeth. When the light shines on them, you can see the concave ridge. Makes people think I had braces that ate the enamel off the middle of my teeth. :-/
So you study review papers…not patients…. to draw your conclusion? All my baby teeth turned black and rotted. I am 60 years old, back then it was hypothesized this was due to the excessive sugary antibiotic being given as my teeth were developing to treat the chronic allergic bronchitis. I would turn blue due to choking in my own phlegm as an infant. Later… years later… when I was able to talk and communicate what was causing my allergic response I shared it was the cigarettes the smoke. But by then I had lost all my baby teeth and due to mouth breathing my jaw developed with severe under overbite requiring reconstructive surgery. I had a front tooth that had a bump and temporarily dislodged easily dislodged and it discolored and the discoloration never resolved. Many obsessed teeth and very sensitive gums, very sensitive. So many cavities as a youth and adult and discomfort. On an allergen panel I tested with an allergic response to almost everything on the central tray of allergy testing. Everything. The jaw reconstructive surgery was done with metal wires and I developed a sensitivity to metals. Constant “TMJ” pain. I experienced a nerve snapping post surgery resulting in six months of healing that nerve with severe pain in the back of my head. My daughter had to have an appliance to expand her pallet. Later she was told all of her teeth were barely connected and if any injury she would likely loose them permanently. My youngest sons teeth rotted, unknown reason requiring crowns in his baby teeth. Yet none of us knew, nobody, of Ehlers Danlos. I believe the presentations are there in other types yet maybe the severity isn’t as present or reported. Maybe unless there is a query regarding dental it might not be in papers or peer reviews. Maybe even the patient isn’t aware of their early childhood dental history. My gums bleed all the time. any abrasion causing bleeding. I begged dentist to remove all my teeth yet they would not. My aunt had all her teeth removed in her 20’s and she and her children in my opinion present with vascular EDS and the same with my daughter and I. In my aunts day they removed teeth. It enabled her to live healthier due to the lack of inflammation and infection and bacteria. My mouth has been a source hotbed of disease my whole life which is why I believe I developed Mast Cell Activation. Thank you. But please please survey and review the patients not peer reviews to draw conclusions you might find more from the source… their mouth. Thank you for your presentation. I still want all my teeth removed yet have no access to care and have had two at a time removed with charity events yet it is risky considering potential complications to receive care in this way. I have so many accessed and bacteria filled areas under teeth that need to be removed. Should have been removed so very long ago. Due to the severe MCAS it is almost impossible to access dental care and treatment . So thank you for entertaining taking this to the patient base and doing a further evaluation in the future that is so necessary
Ah yes, the connection of folks that have experienced actual medical trauma, repeatedly, at the dentist when the local anesthesia does not work and eds. How are we feeling about this? Fear ot the dentist..? Mistrust toward the medical community?
great presentation , thank you. There is a Nobel prize waiting for the person who someday can develop decent quality webinar audio....
EDS here with dental issues. everything got better with water flossing. + brushing and flossing. Peroxide diluted With water and then with baking soda solution following got rid of periodontal crisis. Now I use baking soda and water with brush and oral water flosser.
I have vascular and I had tooth crowding, with 4 extra deformed adult teeth that had to be pulled before I had braces. I was 10 years old. Took my first dentist over 2.5 hours to pull one tooth because one root was hooked and I was in immense pain during the procedure. My parents changed dentists and they gave me nitrous oxide during the extraction with no problem. I never had issues with tooth decay other than pitting in my bottom rear molars that were filled when I was still a child.
I've also had to have extra local anesthetic with dental procedures. I can send my dental X-rays as well.
Thank you for making this public. Appreciate all the research and work Ehlers-Danlos society does
VEDS definitely is affected; I have had gum surgery to graft new tissue onto my gums in four areas to help prevent further gingivitis at age 24, I know of another young woman with the same issue. I have 4 implants and had to have cadaver bone implanted into my mouth and heal for almost a year before putting the bone implant/graft. I only lost one implant, but the dentist who did it did not put a long enough post. I had to go to an oral surgeon for my successful implants(for now successful).
My families cases would be helpful. I am 50, my sons are now 20 and 23. No email was listed. I am aware of these things, but also want to question as far as the rapid collagen deterioration being triggered by illnesses. I have know and suspected it for some time now, because of my sons and myself. Covid-19 has thrust this into light as well. I suspect a triggered collagen myositis in us, with perhaps a predisposition in EDS, but my youngest is the only one formally dx. His story is incredible in its own rights. Has anyone asked about illnesses 6 or less months prior to the rapid destruction of their teeth. Our cases, including my youngest who had covid has dentistry involvement. I have records on us. I had no cavities until my 20's (same with an aunt of mine, who's mouth also went haywire suddenly). There were toxic and immune inflammation triggers that have flared, stopped, and flared again, over the last 20 - 30 yrs with my family. My father and brother also had dentures early. My 23 yr old, was just told this fall, all teeth need to be removed and he is wanting implants. My biggest fear is that since our family gets these illness flares, that cause rapid collagen deteriorations , that his implants will fail. My youngest and our cases, show that the inflammation can be calmed if not stopped from being destructive. I am talking representative, not just in dentistry but also our joints and more. At this point, I am willing to donate all of my and my sons records to at least get them helped and to help so many others ultimately. Even the anesthesia applies here. My youngest did not get the sort with epinephrine because of heart issues his entire life. BUT the heart meds he was on, added to his young teeth being awful. I had an extra tooth, but a missing wisdom tooth. He had 1 baby tooth that had to be removed because it just would not fall out - not the root but very long enamel. If nothing else, I am and OCD sort of record keeper, mostly because of how complex my and my sons cases medically have been since yr 2000. The lack of appropriate help, honestly, just medicine slow and behind. I hoped one day, dots could be connected, and yet even though I connected some for my youngest in his teen years, the most profound dot connections came after, because he had an accidental remission of all things, and a relapse. And yes, I mean in HEDS symptoms among other things. What is incredible is from our fall 2017 illness trigger, how horrifically that has impacted all 3 of our mouths, to this day. We were not doing that bad before. 30 yrs age difference between myself and the youngest. We all broke teeth within months of each other too. Secondary to initial illness trigger.
Yep. Same
Not ONLY DO I HAVE hypwrmobility, but I have vascular with long roots, & SEVERE decay... Another dentist said he was surprised I still had teeth with my condition being a severe as it is. Unfortunately, Im losing them quicker than I can replace. I pray I can even get implants and have no issues after
Oh and did I mention PAIN MEDS AKA ANESTHESIA DOESN'T WORK THE SAME ON ME... Now I KNOW WHY!!
I'm cEDS. As far as I know every generation of my family has started losing teeth at a young age. I lost my first adult tooth in my twenties I'm very close to losing all of my teeth in my thirties. :(
My mom had all of her teeth out after the birth of my older brother she was 19. My Grandma lost her teeth in her early 20s. I've had issues with my teeth my whole life. My baby teeth all needed fillings. All my teeth have fillings besides 1 but that's starting to have issues too. I have osteopenia. That started in my 20s. Unfortunately until my most recent dentist all my other dentists just treated me like I was ignorant and causing the issues myself by never brushing or flossing. Dental care has always been a nightmare for me as numbing medication processes differently in my system. Even the ones that are recommended for people with EDS don't work properly. Laughing gas finally got me to not be terrified of the dentist only took me 34 years.
Is there any written reports as yet?
So.... she says she has never seen a patient with other types of EDS, but since there are no papers... then she can say periodontitis is not more prevalent in other EDS types.
How about trying to actually see other types of EDS patients? Before making any statements?
I didn’t read your comment before I typed mine exactly
My oldest son who had eds had very bad teeth his teeth were over crowded.
I have EDS and I had crowding (had to remove 4 teeth), pain while flossing even though I do it daily and ulcers in the inside of my cheeks...
I have cEDS and I'm also a redhead.
I have always thought that visiting the dentist and having freezing that doesn't take was related to being a redhead not being related to my EDS.
I have Hypermobile EDS, and I have enamel hypoplasia on all my teeth. Looks like a ridge on ALL my lower and upper teeth. When the light shines on them, you can see the concave ridge. Makes people think I had braces that ate the enamel off the middle of my teeth. :-/
I am siffering from this right now..Its devastating... i have been losing teeth since I was 30...
So you study review papers…not patients…. to draw your conclusion?
All my baby teeth turned black and rotted. I am 60 years old, back then it was hypothesized this was due to the excessive sugary antibiotic being given as my teeth were developing to treat the chronic allergic bronchitis.
I would turn blue due to choking in my own phlegm as an infant.
Later… years later… when I was able to talk and communicate what was causing my allergic response I shared it was the cigarettes the smoke.
But by then I had lost all my baby teeth and due to mouth breathing my jaw developed with severe under overbite requiring reconstructive surgery.
I had a front tooth that had a bump and temporarily dislodged easily dislodged and it discolored and the discoloration never resolved.
Many obsessed teeth and very sensitive gums, very sensitive. So many cavities as a youth and adult and discomfort.
On an allergen panel I tested with an allergic response to almost everything on the central tray of allergy testing. Everything.
The jaw reconstructive surgery was done with metal wires and I developed a sensitivity to metals. Constant “TMJ” pain. I experienced a nerve snapping post surgery resulting in six months of healing that nerve with severe pain in the back of my head.
My daughter had to have an appliance to expand her pallet. Later she was told all of her teeth were barely connected and if any injury she would likely loose them permanently.
My youngest sons teeth rotted, unknown reason requiring crowns in his baby teeth.
Yet none of us knew, nobody, of Ehlers Danlos.
I believe the presentations are there in other types yet maybe the severity isn’t as present or reported.
Maybe unless there is a query regarding dental it might not be in papers or peer reviews. Maybe even the patient isn’t aware of their early childhood dental history.
My gums bleed all the time. any abrasion causing bleeding.
I begged dentist to remove all my teeth yet they would not.
My aunt had all her teeth removed in her 20’s and she and her children in my opinion present with vascular EDS and the same with my daughter and I.
In my aunts day they removed teeth. It enabled her to live healthier due to the lack of inflammation and infection and bacteria. My mouth has been a source hotbed of disease my whole life which is why I believe I developed Mast Cell Activation.
Thank you. But please please survey and review the patients not peer reviews to draw conclusions you might find more from the source… their mouth.
Thank you for your presentation.
I still want all my teeth removed yet have no access to care and have had two at a time removed with charity events yet it is risky considering potential complications to receive care in this way.
I have so many accessed and bacteria filled areas under teeth that need to be removed. Should have been removed so very long ago.
Due to the severe MCAS it is almost impossible to access dental care and treatment .
So thank you for entertaining taking this to the patient base and doing a further evaluation in the future that is so necessary
Ah yes, the connection of folks that have experienced actual medical trauma, repeatedly, at the dentist when the local anesthesia does not work and eds. How are we feeling about this? Fear ot the dentist..? Mistrust toward the medical community?