Living Life, Within the Limits of Chronic Illness

Category: Amelogenesis Imperfecta

Amelogenesis Imperfecta

So I figured since I mentioned I suffered from Amelogenesis Imperfecta in my last blog post I really should explain a bit about it! Especially as it’s a rare genetic condition and I haven’t actually met anyone else other than my relatives who suffer from it.

Amelogenesis Imperfecta is condition that makes the enamel on teeth form abnormally. I basically had no enamel left on my teeth. My teeth were incredibly sensitive to hot and cold, were a brown/yellow colour and were incredibly difficult to keep clean because the surface of them was rough.

I grew up being teased at school, told I didn’t clean my teeth, when in fact I spent five to ten minutes brushing them in the belief doing so would make them whiter. (I was five and soon learned this wasn’t to be the case!)

I was referred from dentist to dentist, before being sent to the Dental Hospital in Whitechapel. Where each dentist I saw would say something different, use an electric toothbrush it’ll help you clean them better, don’t use an electric toothbrush it’ll do more damage than good because the teeth are so fragile!

I was also seen by a orthodontist when I was 9, that was terrifying! I mean I’d got used to going up to London, having one or two different people look at my teeth but at the orthodontist appointment there was 10 of them! Took a long time for them to just say, we can’t do braces or anything because the teeth are too weak.

In 2003 I had a general anaesthetic in The Royal London Hospital to have temporary white coatings & stainless steel caps put on. As well as having 5 teeth taken out. I was discharged from there at 10pm that night, had to get a taxi from Whitechapel to the station just outside London where we’d parked as I wasn’t allowed to use the trains. That was quite an experience though, I was absolutely petrified.

The I got M.E. in 2005 and dental appointments fell away for about a year and had to arrange a local alternative – there was no way I could travel to London in the condition I was in. So I saw local dentists, each saying different things, moaning I wasn’t cleaning them well enough. There was many tears of frustration – I was doing the best I could given how ill I was and how difficult it was to clean the teeth.

I hated going up to London, come to think of it I hated going to the dentist back then, always wondering what criticism they were going to throw at me as I could never do anything right. What one dentist told me was right, another dentist said was wrong. I couldn’t win.

In 2009/10 having improved significantly, I was referred back to London and the Dental Hospital there in the hope they’d be able to do something. No such luck, well they could but it wouldn’t happen til I was in my mid twenties. My grandparents were less than impressed by this and told us to investigate how much it would cost to go private. The answer A LOT. But they would not be stopped.

So in April 2010 I started having private treatment. Appointments often twice a week, sometimes twice a day! It took 2 months, 17 crowns, 4 veneers and a bridge to complete the work and now my teeth are protected and white! The private dentist said that if I’d waited til my mid twenties there’d be hardly any tooth left to do anything with.

After so many years of tears, wishing I had white teeth and hardly smiling properly, these days I have the confidence to smile and laugh without worrying what people will say about my teeth. I’ve got so much more confidence it’s amazing! I am forever in my grandparents debt for giving me the opportunity and the means to get my teeth sorted.

I now pay insurance to cover private dental work so regular check ups etc. so they can be done with that same dentist who did all the work.

I’ve taken over the bathroom with my dental products – I have two different toothpastes at the moment; one for ordinary use the other specially for my wisdom tooth. Two toothbrushes – a single tufted one for the wisdom tooth and a small one for the rest of them. The there’s two different flosses one for the bridge and the other for all the other teeth! Takes me 10-15 minutes to work through it all, but is so worth it to maintain these beautifully white teeth! But it can be hard to find the ‘spoons’ when I’m at my worst.

The only trouble I have with my teeth at the moment is a wisdom tooth – because all the other teeth are protected by the crowns etc. I’ve gotten used to not having much sensitivity. This wisdom tooth is affected by the Amelogenesis Imperfecta and as a result is incredibly sensitive as it breaks through the gum. Despite growing up with such sensitive teeth I’d totally forgotten how painful it can be! Hopefully it’ll come through fully soon and I’ll be able to get it sorted as well. In the meantime I’ve just got to get used to the pain.

Anyway I hope this has helped you understand another aspect of my life, any questions just let me know and I’ll do my best to answer them.

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Soo got some good news to post…and about time too!

I’m making improvements. Pain is easing a bit, apart from the odd clicking joint and a wisdom tooth coming through. Oh the joys of having Amelogenesis Imperfecta, tooth sensitivity is immense and it’s only just breaking through the gum! Anyway, other than the wisdom tooth things are generally improving. Sleeping better is helping lots as well!

For the past week or so I have been managing to get about inside the house minus the crutches!! Still grabbing onto furniture occasionally to steady myself but it’s progress! Also started slowly walking down the stairs on good days – giving my bum a much needed rest from bottom shuffling! Don’t dare to do it when I’m not feeling particularly good though. And I’m still using the crutches in the garden where there is very little to grab onto should I need support…learned a while back that a wire fence just goes down with you! Haha.

Also got some great assignment results which really surprised me! See my other blog for details:

In other even more exciting news I’ve met someone special and hope to meet up and go out with him properly soon. Never did I think it would be possible given the situation I’m in with my health, being stuck in the house most of the time it seemed impossible. But I’m very lucky to have met someone, especially someone who understands this illness as well.

Another bit of good news is I’m in the process of ordering a new lightweight wheelchair as I really dislike the one we have at the moment – every bump in the pavement is really noticeable so it makes any trip out even more tiring. Fingers crossed it means I’ll be able to get out a bit more!

All in all life is on the up, I’m so happy at the moment even the situation with my neighbours isn’t getting me down! In fact I think I’m annoying them by going about in the garden so happy, but tough luck – my garden, my life, I’ll smile all I want! šŸ˜€

Anyway that’s all for now, (I think) hope to be able to update this blog a bit more as I continue to improve.

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