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burden



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PostSubject: New Surprises!   Wed 26 Apr 2006 - 17:35

Hi! I know there aren't many people on this site, but I might as well try and start something going!

I was wondering if there are any newly diagnosed "oldies" out there like me? I am 35 and have a 2 month old son with ED (EEC), he was diagnosed at 4 days with ED and I got my own diagnosis on the same day Rolling Eyes , as given the list of possible symptoms it was blindingly obvious I have it too in the EEC format. I note that Mike (moderator) is 20, and therefore diagnostics must be better these days, is this the case? I'd love to hear from anyone who might be in a similar situation. I noticed one of the other posts asked how do you live with ED? Well, if you don't know you have it, and you don't know what you might find you have wrong with you next, then it's very much like walking around in the dark! I hope my son can have a better start in life, with all the information available to him and uis from the outset.
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PostSubject: Re: New Surprises!   Thu 27 Apr 2006 - 17:10

Hey Nina! Before I start, thank you for joining us here at ED Forums!!!

Do you have any of the 'visible' symptoms? I haven't heard of this before as I was diagnosed at the very early stages. And in terms of 'how to live with ED' I agree with your analogy in the sense that if you don't know you actually have it then you can't describe how you live with it, because it's what you see as the 'norm'.

In terms of the site being quiet as I say, the newsletter will hopefully be delivered on the 3rd of May with the details as Diana informed me.

Again, thanks for joining us and I hope you stick around! cheers

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burden



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PostSubject: Re: New Surprises!   Thu 27 Apr 2006 - 21:52

Thanks for the reply Mike, I've never used a forum before, and it works!

"visible" symptoms I have are: blonde, originally thick, unruly and very dry, and now very sparse, now have bald patch, which takes forever to grow. Fair dry skin, conical and missing second teeth, milk teeth that came through and disintegrated. Thin, ridged nails that don't grow. Bilateral cleft lip and palate, impacted ear wax, missing tear ducts, ingrowing eyelashes, minimal body hair (great on the legs though, my friends are jealous!). I have also been diagnosed with bronchiactesis from age 7ish. And as for the "Dactyly" part of EEC, I have one missing toe joint, not a lot to write home about. However my son's hands and feet are clefted and fingers and toes are joined and in an odd arrangement, but hey, who is to say that the standard arrangement of fingers it the best??!

Also now I come to think about it, I hate being hot and hate being cold, whilst I do perspire, I am now wondering whether my general ability to regulate temperature is a bit temperamental, (some might say it's like the rest of me!)

Anyway, you'd have thought that with this lot, which has been investigated by each medical department, separately, that someone might manage to get 2 and 2 to come to 4, but apparently not.

So, do you think it makes a difference to know what you have and what lies ahead, I suppose neither of us can answer what it 's like to know or not know, but do you think there are benefits?

Hopefully you are not Sleep !!!
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PostSubject: Re: New Surprises!   Fri 28 Apr 2006 - 15:48

Hey!

It does surprise me that with so many symptoms that it hasn't been investigated in the past.
I'm the same, but I don't sweat at all. I was also diagnosed with Bronchiectasis last year after a gruelling 4 month chest infection and many tests including a bronchoscopy which was AWFUL!!
I hate the heat, I feel it more than others. However, when it's cold, I feel colder than others.

Knowing about my conditions since I was a child gives me enough knowledge about the condition itself, but knowing what's in store doesn't change the way I live at all. I have a successful streak as a DJ in hot clubs, I have been to America 3 times. Majorca twice and Tenerife, none of which are considerably 'cool' climates Laughing. I also love to go out and get drunk as the average 20 year old does! I have a great set of mates who just don't bat an eyelid about my condition. I try not to let it bother me. I'm happily engaged although I'd never let her see me without my teeth, a personal choice rabbit

All in all, I'm happy with my life. Yes, there are a lot of things I'd LOVE to change...but is that not the sace with everybody, ED or not? Smile

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burden



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PostSubject: Re: New Surprises!   Fri 28 Apr 2006 - 16:48

Our general outlooks appear similar Very Happy , afterall, most people want to change something about themselves, I can't say that now I know what I have has a name, and what I thought were unrelated things are actually connected, that I feel different about myself. My regret in not knowing is that I have passed it to my son, and whilst I thought I had a sand alone Cleft lip and palate, where stats in passing this on is one in 30, the ED is probably a bit more 50:50, I have a daughter aged 2 who has no signs of ED, and whilst I would probably have had my son, I would have liked to made an informed choice about it.

I know what you mean about teeth! I had my first set when I was 13, when I still had my 2 front teeth, they were horrid, I thought I was going to throw up all the time, I now have a full set and I broke my bottom set and had to go to work without them, it was horrible! I didn't talk to anyone that week! Actually it was the week of the works christmas do santa , and I had to have salmon so I could eat it! I couldn't not go, well, you miss out on soo much gossip if you don't Razz

It would have been useful to know about the ED for the purposes of saving a fortune on hair products that claim to calm frizzy hair Exclamation It is a real relief to know that it's just the way it is and that's that. I can now stop obsessing about why my hair won't do what it might otherwise do. Quite honestly it's disappearing fast so I should enjoy it while it lasts. bom

Growing up I had no real bad experiences, but then it probably helped not to have a label, other than having the cleft lip which was obvious enough and enough to have made primary school a nightmare, but secondary school was fine, all girls though, so that probably helped. I have a few good friends, and quite happy with my own company, fear of rejection and all that probably! If you want psychobabble!

Now I'm thinking about what it was like not to know, I suppose it would have been useful so that each thing as it came up or what identified I would probably been able to take it in my stride better, than thinking everything was ok in the intervening years or months only for something else to come up, but hey none of it is serious, it just got a bit wearing I suppose, like,"Oh what now!!??"

How old were you when you got your diagnosis then? And did this prepare you for what may or may not come along? I think the dentition thing was hardest for me, as it was hours at the orthodontists for what turned out to be very little benefit, because I ended up losing them all anyway, and I didn't know why.

Hope to see loads of peple here next week then after the newsletter, come on guys where are you?!
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PostSubject: Re: New Surprises!   Fri 28 Apr 2006 - 18:06

Well, we are all here for a reason. This is how we were made, there's no turning back, so make the damned best of what we got!!!!

Can't wait til this place gets busier, I'm very excited!

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sarahcrosby2

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PostSubject: Re: New Surprises!   Sun 3 Sep 2006 - 15:46

burden wrote:
Our general outlooks appear similar Very Happy , afterall, most people want to change something about themselves, I can't say that now I know what I have has a name, and what I thought were unrelated things are actually connected, that I feel different about myself. My regret in not knowing is that I have passed it to my son, and whilst I thought I had a sand alone Cleft lip and palate, where stats in passing this on is one in 30, the ED is probably a bit more 50:50, I have a daughter aged 2 who has no signs of ED, and whilst I would probably have had my son, I would have liked to made an informed choice about it.

I know what you mean about teeth! I had my first set when I was 13, when I still had my 2 front teeth, they were horrid, I thought I was going to throw up all the time, I now have a full set and I broke my bottom set and had to go to work without them, it was horrible! I didn't talk to anyone that week! Actually it was the week of the works christmas do santa , and I had to have salmon so I could eat it! I couldn't not go, well, you miss out on soo much gossip if you don't Razz

It would have been useful to know about the ED for the purposes of saving a fortune on hair products that claim to calm frizzy hair Exclamation It is a real relief to know that it's just the way it is and that's that. I can now stop obsessing about why my hair won't do what it might otherwise do. Quite honestly it's disappearing fast so I should enjoy it while it lasts. bom

Growing up I had no real bad experiences, but then it probably helped not to have a label, other than having the cleft lip which was obvious enough and enough to have made primary school a nightmare, but secondary school was fine, all girls though, so that probably helped. I have a few good friends, and quite happy with my own company, fear of rejection and all that probably! If you want psychobabble!

Now I'm thinking about what it was like not to know, I suppose it would have been useful so that each thing as it came up or what identified I would probably been able to take it in my stride better, than thinking everything was ok in the intervening years or months only for something else to come up, but hey none of it is serious, it just got a bit wearing I suppose, like,"Oh what now!!??"

How old were you when you got your diagnosis then? And did this prepare you for what may or may not come along? I think the dentition thing was hardest for me, as it was hours at the orthodontists for what turned out to be very little benefit, because I ended up losing them all anyway, and I didn't know why.

Hope to see loads of peple here next week then after the newsletter, come on guys where are you?!
Hi there - I've only just noticed this thread (blonde!) so sorry if I haven't said hello before!
I have EEC - was given the label as a child but that was it - no further info given just a label! Which pretty much meant that my parents just had to get on with it! And I really believe that's why I turned out the way I did - happy, confident,loud, extrovert etc! I feel that maybe had they had all the info they may have treated me differently. As it was, being the oldest I got the strictest up bringing so that probably helped make me such a tough nut! I was never allowed to use my syndrome to my advantage (except at school which I haven't admitted to my parents yet! Oops!) I have 2 brothers and a sister (none of whom are affected) and the youngest got away with murder as a teenager compared to me!
I think somethimes it is better to not know things - I and know that I wouldn't be here today if my parents had know about me antenatally - which i respect as that would have been their choice. But because ulta sounds weren't invented then I am arrived and they had to make the best of it and they did!! Tah Dah! I'm here!
Did any of this have a bearing when I became pregnant?
Not really -I found out via my dentist at the time that EEC was 50-50 chance of inheritance. I was a few months pregnant by then. It didn't have any bearing as at the time I wasn't aware of the many didfferent types of ED and even the many different ways that EEC can manifest. I assumed that it would be a carbon copy of me!
So I just had the regular ultra sound and my first born (who is now 16) is fine - not affected.#
My second baby - Beth -was diagnosed with kidney problems when i was 12 weeks pregnant and they thought she may have Downs. I didn't have any tests. Somehow I knew it was EEC. Although because she didn't have clefts or any obvious signs they argued about diagnosis. But clearly looking at her now she does! She is 14 now!
And my last baby who is now 7 is not affected.And it was while I was pregnant with him that I found out all of the information that I know today - due to a fantastic health visitor and a friends mum who was sing me as her research for a doctorate! Between the two of them they gave me more info into EEC than all the medics over the years put together! Thank God for the internet!
Having all the information is a personnel choice. Sometimes it helps. Sometimes it just confuses the issue!
Wow that was an epic posting even by my standards! Am off to have a lie down!!
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Mike
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PostSubject: Re: New Surprises!   Sun 3 Sep 2006 - 18:22

And a Lie down you deserve!! Like you said about the 'label' you got as a child, it was very similar with me and again, thats why (I think) I'm so loud and outgoing! I knew, that as a younger person, I had to be a little different in personality to hide the fact that I LOOKED a little different to other kids. So, I'm now a fully fledged nutter! Laughing

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sarahcrosby2

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PostSubject: Re: New Surprises!   Sun 3 Sep 2006 - 18:35

Nutty people are the Best!

Ask all my friends!!!


Oh wait on second thoughts.................. alien
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PostSubject: Re: New Surprises!   Wed 8 Nov 2006 - 20:49

I agree...I'm so nuts, I'm glad im not allergic to them!!! Laughing

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PostSubject: nutter!   Wed 8 Nov 2006 - 21:00

Hello again! Long time no chat! Where the flip is everyone!! Saw your bit in the newsletter but it doesn't appear to have inspired people to chat! Maybe its me! maybe I'm putting people of!!
Oops!
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PostSubject: Re: New Surprises!   Thu 9 Nov 2006 - 17:37

I know sarah, how you doing?

It's a shame because this place would really become a key part in bringing more and more people with ED together! Crying or Very sad

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burden



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PostSubject: Re: New Surprises!   Sun 12 Nov 2006 - 19:04

Hi! I'm still here, but soooo busy, so have hardly any chance to catch up, I do pop in now and again to see what's happening, but as you say, not a lot at the moment!

Anyone got any top tips on how to manage 2 small children and a house, a reluctant hubby and a full time job? I know: if you knew that you'd market it and make a fortune. I have no idea how to fit christmas into the schedule, so I'm cancelling it! Bah humbug!!! rendeer
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PostSubject: Re: New Surprises!   Mon 13 Nov 2006 - 18:15

I might try that, how do you think I should do it? Some sort of medication? A strategy???

A super-space outfit you can wear to speed things up by 100!?

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Heila Butters

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PostSubject: Curious   Mon 4 Dec 2006 - 16:13

Hi there!
Sorry, I've missed this forum (there are quite a few to look out for) but I must also say I would have thought it would be busier too.
I am really curious as to something both of you mentioned, Mike and Nina. You mentioned Bronchiectasis.
Do you think there is a relationship between ED and lung infections/Bronchiectasis? I took part in a survey done by EDucator from the US, but I don't know what the outcome of it was yet and I still have many questions.
I would also like to know if there is a connection between having a low immune system and ED.
My son Sean is now two and he has spent a large amount of his life in hospital with pneumonia. He has also had Tuberculosis. I've looked Bronchiectasis up on the internet and alot of his symptoms coincide with the information. I have forwarded this on to the doctor of immunology working with my sons case and am waiting for feedback.
Sean's diagnosis isn't firm yet. One doctor thought his conical teeth were just familial, the lung problem and TB just a coincidence and the phagocytic dysfunction (immune proble) inherited from me. It almost seems like they think he just had a stroke of bad luck in having so many different things (not related) wrong with him.

But what if they are related?
I'll not go into my health history because I was a very sickly child and the doctors could never quite figure out what was wrong with me. I difficulty in both my childrens births (I was in labour from 10:00pm the Monday evening until 3:40am the Thursday morning.
When I gave birth to Sean, I had no embriotic fluid left in my womb and he had to be born by Ceasarian. My contractions were also not normal. Have other woman with ED also experienced this? My sister has two half uteruses, started early menopause at 27, could only get pregnant by IVF (donated eggs) and is this connected to ED? I have two brothers with no symtoms? Neither my sister or I have any visual physical symptoms of ED. My daughter doesn't appear to be affected, but if I do have a mild version of ED (most likely Autosomal X-linked?) is it not likely my daughter is also a carrier?
I'll stop now. Gosh there is so much I would like to know.
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PostSubject: Re: New Surprises!   Mon 4 Dec 2006 - 23:04

Hi Heila.
I know that through meeting other people that chest problems (infections, asthma, bronchiectasis) are very common with Ectodermal Dysplasia. And you know what? This is because of their Low Immune System!

I have lost count of the amount of chest infections I have had in my life, lets say maybe 2-3 a year at least. The bronchiectasis, for me, just gave me an answer to all the infections I have had. It didn't make me worry any more, or feel as if I had something 'extra' to cope with. I just get on with what life throws at me!

It sounds like you're having a lot of trouble getting a firm diagnosis. This is just a personal message. But if it turns out he HAS ED, don't let it get you down. At the end of the day, it is just a 'label' of what you have been dealing with for a while now. Doesn't change the way any of us are inside!!

So you say you are a member on other forums?

It would be great to pass this URL on and generate some more attention! drunken

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Heila Butters

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PostSubject: National Foundation for Ectodermal Dysplasia   Tue 5 Dec 2006 - 9:40

Check out http://www.nfed.org/ Shocked
You can download medical articles about ED that have appeared in previous editions of the EDucator (their newsletter) at http://www.nfed.org/MedicalArticles.htm.
Simply type in the username nfed and the password smile to access this page.
Founded in Mascoutah, Illinois, in 1981, the NFED is a tax-exempt, non-profit organisation.
P.O. Box 114, 410 E. Main Street
Mascoutah, IL 62258-0114 USA
Phone-618-566-2020\Fax-618-566-4718
info@nfed.org
It is open to all interested!

Thanks Mike! For your kind words. I'm not worried so much if Sean has ED as I am not knowing what all his other symtoms are. It kills me slowly to watch him suffer so much and he has been so ill that we nearly lost him a few times. But he's a little fighter and God won't give us any burdens we can't cope with. sunny

Kind regards
Heila
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PostSubject: Re: New Surprises!   Tue 5 Dec 2006 - 13:47

Been on the NFED website a lot and it is very helpful.

He'll do just great! Cool

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PostSubject: Re: New Surprises!   Fri 25 May 2007 - 11:53

I didn't get the usual e-mails relating to the additions to this topic, which I think I should have, as I started it!!

so, my apologies for the delay in responding!

I was diagnosed with bronchiecisis and doctors assumed this was as a result of undiagnosed pneumonia - unlikely now I have the ED diagnosis, I'm sure I have read somewhere that the mucous of the respiratory tract is sometimes affected and this might be the cause. I also have a cleft lip and palate so mouth breathing was attributed to many of my chest infections. It all made sense until my 4 day old son got his diagnosis last year! He too has clefts, so the link between him and me is nice and visibly obvious - we are two peas in a pod! Except he is absolutely gorgeous!

The fertility issue is one I too am curious about as I suspect there might be some ED link. I have two children, but had fertility treatment with both, I also have "strange" glandular tissue, which makes smear testing impossible. As ED has links to glandular malfunction I would like to get all my maladies under one umbrella!

Far from being concerned about my or my son's ED, I was relieved. I was a bit cross that I had wasted so long trying to deal with symptoms that all were the same thing. But now I know the extent of the condition I know what sort of thing is likely to be involved and quite honestly I now know I have nothing more seriously wrong with me but ED. Now that's not so bad! Very Happy
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PostSubject: What other ED links are there?   Wed 30 May 2007 - 18:17

I agree with you... Knowing what the problem is, is half way there, then we just have to know how to treat or best manage it. The problem is, there are quite a few variations and symptoms of ED and recently we found out about the ED-ID one. We are trying to have tests done to determine if my son has this variation as there is a possible cure/treatment for the ID side of it. At the moment my son is hospitilised every three weeks for IV polygam treatment to help him with his immune deficiency. It helps a bit. However, when he goes to hospital he is at risk of picking up other bugs - he has had the MRSA virus twice and twice he picked up gastro viruses. Before the polygam treatment started, my son has been hospitilised more than 18 times of which once was for over 2 months - he nearly died from pneumonia and they didn't know what was wrong. He is only 2. What quality of life is he going to have? We can't risk taking him anywhere unless we are sure there aren't diseases that could maybe kill him. When he gets sick (which is always sudden) we have to rush him to hospital, get blood tests done and try to establish what is wrong to ensure we get the right treatment. Is my son's immune deficiency linked to the ED or not? That has not been established yet. If we don't get a correct diagnoses and we do give him the treatment, it could also kill him. I don't always know what is the right thing to do. Most doctors don't seem to either.
Anyways - good luck!



burden wrote:
I didn't get the usual e-mails relating to the additions to this topic, which I think I should have, as I started it!!

so, my apologies for the delay in responding!

I was diagnosed with bronchiecisis and doctors assumed this was as a result of undiagnosed pneumonia - unlikely now I have the ED diagnosis, I'm sure I have read somewhere that the mucous of the respiratory tract is sometimes affected and this might be the cause. I also have a cleft lip and palate so mouth breathing was attributed to many of my chest infections. It all made sense until my 4 day old son got his diagnosis last year! He too has clefts, so the link between him and me is nice and visibly obvious - we are two peas in a pod! Except he is absolutely gorgeous!

The fertility issue is one I too am curious about as I suspect there might be some ED link. I have two children, but had fertility treatment with both, I also have "strange" glandular tissue, which makes smear testing impossible. As ED has links to glandular malfunction I would like to get all my maladies under one umbrella!

Far from being concerned about my or my son's ED, I was relieved. I was a bit cross that I had wasted so long trying to deal with symptoms that all were the same thing. But now I know the extent of the condition I know what sort of thing is likely to be involved and quite honestly I now know I have nothing more seriously wrong with me but ED. Now that's not so bad! Very Happy
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PostSubject: Fertility (sorry boys!)   Wed 30 May 2007 - 18:34

Hi I'm not sure about a fertility issue unless its maybe only linked with some types of ED.
I have EEC and have 3 kids all concieved without any problems. With my eldest (17) I came of the pill and fell pregnant 3 months later. With my middle one (15) I came of the pilll and fell straight away and with my youngest ( 8 ) I came of the contraceptive injection and fell pregnant 3 months later again.
I have my own theories about this - my middle child is the only one with ED. With my 2 other ones I craved milk yet with my middle one I didn't. Also as with my middle one I fell pregnant straight away I had no time to take folic acid suppliments as I did with the others for 3 months before. As I say those are only my theories but I'm convinced that may have had a contributing factor. That and the fact that with my middle one I made a decision to not drink or smoke yet she was the poorliest of them all! (hope I don't offend anyone with that but it is true and all info should be shared though not necessarily endorsed!!!)
I guess unless proper research is done on all females with ED then we won't know if these things are an issue - unfortunatly when I went to 2 conferences the people I met were all insistant that they were never going to have kids as they didn't want to inflict their syndrome on anybody - which I found quite sad.
We would have had another - regardless of the chance it may have ED - had child number 3 not been such flippiin hard work!!!!
Laughing
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