I and one of my sons both had terrible periodontal disease, extra teeth, receding gums, extremely small pallets and regardless of of oral care, had to have our teeth removed completely before our 20's. My son was the worst, and lost his by 16yrs. My middle sons baby teeth had to be crowned by age 3 years old.
I had to have my teeth pulled due to hEDS just destroying my enamel. One of the weirdest things we found when pulling them is that I had 3molars that had 3 roots and 2 that had 4 roots. Not one of those dentists had ever seen a molar with extra roots let alone a bunch of them. Had multiple asking me if they could keep them and if they could write a paper about my case. They all left looking like kids on Christmas day. Even though it was a hard day for me at least I made someone happy that day 🤣.
I'm confused because in order to be in the studies it seems one needs to have an eds diagnosis, but with peds the main characteristic is the periodontal disease not hypermobility/cig paper scars/etc... at least from what I've been reading. I'm on a hunt for what has been causing my chronic joint pain since childhood (among other things) and eds seems likely but with a low beighton score (I have small joint hypermobility and plenty not included in the scoring like ankles, shoulders, finger, toes, etc) and inconsistent access to medical care its been impossible to sort this out. However my grandmother and mother both had periodontal disease very young (mother in partial dentures by age 16, grandmother caught as well at that time and in full dentures by 40s, this was in the 60's and one of her first dentist's visits, she was born into poverty in 24' so no access) and myself with pre-preriodontal disease as a child (lost baby teeth) and now two lost teeth at 30 ( inconsistent dental care but very obsessive and careful hygiene has helped me stabilize, havent lost a tooth in about 8 years now). pEds seems so likely given this but I'm at a loss as for what to do... all in all though this was very informative and helpful, thank you for posting.
Hi there, Periodontal EDS (pEDS) is a specific subtype of EDS caused by mutations in C1R and C1S. The periodontitis is severe, rapidly progressing, with early onset in adolescence at the mean age of 14 years. Typically the teeth fall out with the whole root, with the intact root. Periodontitis is a highly prevalent disease and can occur in other types of EDS, but this is not pEDS. Other main characteristic features of periodontal EDS are pretibial discolorations and also specific gum phenotype. Major criteria are: - Severe and intractable periodontitis of early onset (childhood or adolescence); - Lack of attached gingiva; - Pretibial plaques; and - Family history of a first-degree relative who meets clinical criteria. There are eight minor criteria. The minimal criteria required to suggest pEDS are the first criterion or the second criterion, plus at least two other major criteria and one minor criterion. Minor criteria are: -Easy bruising -Joint hypermobility, mostly distal joints -Skin hyperextensibility40 and fragility, abnormal scarring (wide or atrophic) -Increased rate of infections -Hernias -Marfanoid facial features -Acrogeria -Prominent vasculature A final diagnosis requires molecular testing; pEDS is caused by heterozygous gain-of-function mutations in C1R or C1S. At present it cannot be stated whether absence of a C1R or C1S mutations excludes the diagnosis because the experience with the molecular diagnosis is limited. Are you able to visit a geneticist?
Welcome to the unlucky club! It is easy to rule out that type of EDS but it is also possible to have major dental issues with other types. I had major dental issues even at 4 years old and have had at least 25 dentists by the age of 40. My major issues are fragility and abnormal dentin/enamel. Despite fluoride pills, rinse, paste, floss, treatments I would still present with as many as 13 cavities at a time. Any tooth root canal needs a same day crown or it breaks. Even with root canals, they need retreated for missed abnormal roots. When i had wisdom teeth removed they just left a shattered root and nerve buried in my jaw then told me there's nothing there so I can't be in pain. ;)
@@kittyarcade2296same here and I have hEDS and had to have my teeth all pulled at 29 years old. My enamel was so weak that at one point the rinses and treatments just weren’t enough and I was in constant pain. Tbh I’d rather have the dentures and get implants than to keep living with bad looking teeth that are torturing me.
I and one of my sons both had terrible periodontal disease, extra teeth, receding gums, extremely small pallets and regardless of of oral care, had to have our teeth removed completely before our 20's. My son was the worst, and lost his by 16yrs. My middle sons baby teeth had to be crowned by age 3 years old.
I had to have my teeth pulled due to hEDS just destroying my enamel. One of the weirdest things we found when pulling them is that I had 3molars that had 3 roots and 2 that had 4 roots. Not one of those dentists had ever seen a molar with extra roots let alone a bunch of them. Had multiple asking me if they could keep them and if they could write a paper about my case. They all left looking like kids on Christmas day. Even though it was a hard day for me at least I made someone happy that day 🤣.
I'm confused because in order to be in the studies it seems one needs to have an eds diagnosis, but with peds the main characteristic is the periodontal disease not hypermobility/cig paper scars/etc... at least from what I've been reading. I'm on a hunt for what has been causing my chronic joint pain since childhood (among other things) and eds seems likely but with a low beighton score (I have small joint hypermobility and plenty not included in the scoring like ankles, shoulders, finger, toes, etc) and inconsistent access to medical care its been impossible to sort this out. However my grandmother and mother both had periodontal disease very young (mother in partial dentures by age 16, grandmother caught as well at that time and in full dentures by 40s, this was in the 60's and one of her first dentist's visits, she was born into poverty in 24' so no access) and myself with pre-preriodontal disease as a child (lost baby teeth) and now two lost teeth at 30 ( inconsistent dental care but very obsessive and careful hygiene has helped me stabilize, havent lost a tooth in about 8 years now). pEds seems so likely given this but I'm at a loss as for what to do... all in all though this was very informative and helpful, thank you for posting.
Hi there, Periodontal EDS (pEDS) is a specific subtype of EDS caused by mutations in C1R and C1S. The periodontitis is severe, rapidly progressing, with early onset in adolescence at the mean age of 14 years. Typically the teeth fall out with the whole root, with the intact root. Periodontitis is a highly prevalent disease and can occur in other types of EDS, but this is not pEDS. Other main characteristic features of periodontal EDS are pretibial discolorations and also specific gum phenotype.
Major criteria are:
- Severe and intractable periodontitis of early onset (childhood or adolescence);
- Lack of attached gingiva;
- Pretibial plaques; and
- Family history of a first-degree relative who meets clinical criteria.
There are eight minor criteria. The minimal criteria required to suggest pEDS are the first criterion or the second criterion, plus at least two other major criteria and one minor criterion.
Minor criteria are:
-Easy bruising
-Joint hypermobility, mostly distal joints
-Skin hyperextensibility40 and fragility, abnormal scarring (wide or atrophic)
-Increased rate of infections
-Hernias
-Marfanoid facial features
-Acrogeria
-Prominent vasculature
A final diagnosis requires molecular testing; pEDS is caused by heterozygous gain-of-function mutations in C1R or C1S. At present it cannot be stated whether absence of a C1R or C1S mutations excludes the diagnosis because the experience with the molecular diagnosis is limited. Are you able to visit a geneticist?
Welcome to the unlucky club! It is easy to rule out that type of EDS but it is also possible to have major dental issues with other types.
I had major dental issues even at 4 years old and have had at least 25 dentists by the age of 40. My major issues are fragility and abnormal dentin/enamel. Despite fluoride pills, rinse, paste, floss, treatments I would still present with as many as 13 cavities at a time. Any tooth root canal needs a same day crown or it breaks. Even with root canals, they need retreated for missed abnormal roots. When i had wisdom teeth removed they just left a shattered root and nerve buried in my jaw then told me there's nothing there so I can't be in pain. ;)
@@kittyarcade2296 I know it’s been over a year, but how are you doing now if you don’t mind me asking.
@@kittyarcade2296same here and I have hEDS and had to have my teeth all pulled at 29 years old. My enamel was so weak that at one point the rinses and treatments just weren’t enough and I was in constant pain. Tbh I’d rather have the dentures and get implants than to keep living with bad looking teeth that are torturing me.
Superb
How do I get the email address? I'm struggling immensely from dental destruction, and am in desperate need of guidance to someone who can help me.
I DON'T UNDERSTAND
Where is the email address please?
ines.kapferer@i-med.ac.at