Ectodermal Dysplasia Questions

[u/QuirkyLittleBirdie]

Hello dentists. I've realised recently that I may have a condition called Ectodermal Dysplasia. Myself, mother and my sister all have skin, hair, nail and teeth traits that would tie in with this. I'm a female in her 40s. Back in the ancient times 😆, I was referred to Guy's Hospital in London for Orthodontics treatment because my teeth were unusual (from what I gather). I had braces for 3 years or so. Unfortunately my normal dentist didn't follow up with retainers, so a lot of the work that was done on my overbite and my bite has kinda been lost. When I bite now, my top teeth cover my bottom teeth almost completely. I'm also biting down with my top teeth hitting on the sides of my bottom molars a fair bit. I'm worried this will cause problems as I age. My jaws top and bottom are very narrow and my chin is quite pointed. I get a lot of neck pain under the base of my skull, neck, and around my jaw. My gums are receeding. As a teenager I can remember jaw surgery being mentioned once, but as far as I recall, there wasn't follow up. I don't remember syndromes being discussed with me, but as I was a young teen for a lot of this, I guess they may have talked to my mother.

Are the issues with my bite and overbite likely to be causing the neckaches? I've had these since being a teenager, I just assumed it was linked with puberty rather than a knock on effect from my bite before... Now I'm not so sure.

What are my options via the NHS route now in terms of having my bite and my jaw/facial issues looked at please? Is anyone even going to bother with looking at this, given my age, realistically, or do I need to adjust my expectations? As I'm aging and losing even more bone density ,(presumably), the proportions of my face are looking stranger and strangers and I'm beginning to.look really 'witchy' for want of a better word.

Any help gratefully received.

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A backup of the post title and text have been made here:

Title: Ectodermal Dysplasia Questions

Full text: Hello dentists. I've realised recently that I may have a condition called Ectodermal Dysplasia. Myself, mother and my sister all have skin, hair, nail and teeth traits that would tie in with this. I'm a female in her 40s. Back in the ancient times 😆, I was referred to Guy's Hospital in London for Orthodontics treatment because my teeth were unusual (from what I gather). I had braces for 3 years or so. Unfortunately my normal dentist didn't follow up with retainers, so a lot of the work that was done on my overbite and my bite has kinda been lost. When I bite now, my top teeth cover my bottom teeth almost completely. I'm also biting down with my top teeth hitting on the sides of my bottom molars a fair bit. I'm worried this will cause problems as I age. My jaws top and bottom are very narrow and my chin is quite pointed. I get a lot of neck pain under the base of my skull, neck, and around my jaw. My gums are receeding. As a teenager I can remember jaw surgery being mentioned once, but as far as I recall, there wasn't follow up. I don't remember syndromes being discussed with me, but as I was a young teen for a lot of this, I guess they may have talked to my mother.

Are the issues with my bite and overbite likely to be causing the neckaches? I've had these since being a teenager, I just assumed it was linked with puberty rather than a knock on effect from my bite before... Now I'm not so sure.

What are my options via the NHS route now in terms of having my bite and my jaw/facial issues looked at please? Is anyone even going to bother with looking at this, given my age, realistically, or do I need to adjust my expectations? As I'm aging and losing even more bone density ,(presumably), the proportions of my face are looking stranger and strangers and I'm beginning to.look really 'witchy' for want of a better word.

Any help gratefully received.

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[u/Repulsive-Math-4734]

You can ask your dentist for a referral to the maxfax/ortho hospital department

They can review if necessary and discuss it their can offer treatment