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 Geneticists

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burden



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Number of posts : 25
Age : 47
Location : Canterbury
Age : 37
Registration date : 2006-04-26

PostSubject: Geneticists   Fri 21 Jul 2006 - 16:54

I went to see a geneticist yesterday, and honestly wonder why! I know ED is not likely to be her speciality, there being lots of inherited conditions she probably knows more about.... but I didn't find out any more about my probable EEC than I knew arleady. In fact, at times I seemed a little more informed, in my opinion. Has anyone had any positive experience from this source, I presume it might be useful later on for my son who also has EEC and is only 5 months old.
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Mike
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Number of posts : 188
Age : 32
Location : Middlesbrough, UK
Age : 24
Registration date : 2005-12-09

PostSubject: Re: Geneticists   Sat 22 Jul 2006 - 15:56

Hey.

I don't know actually? I know from past experience though that doctors/ambulance staff/dentists have never really heard of ED, but as far as genetecists go I couldn't tell ya, sorry!

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laura&george

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Number of posts : 8
Location : essex
Registration date : 2006-07-22

PostSubject: Re: Geneticists   Mon 24 Jul 2006 - 16:27

We have been seeing a genetist and have found him really helpful, infact one of the most helpful specialists we have seen really, Georges ED is a bit of an unknown quantity as there is no family trace that we know of, and there doesnt appear to be a named ED that covers all the 'symptoms' that George has, at the moment the genetist is throwing around a connection with Turnpenny ED, but even then he has said there are lots of things that differ from that particular ED that Georges has.

He has shown us reports of other ED cases and quided us well, he aslo sends a detailed report and his thinkings to allow us to keep up with what hes on about (I often find there is so much info I lose track of little details...especially when im trying to keep George cool during the appointment and occupy my 2 year old!!!) he is the only Doctor who has kept us so well informed and provided such clear explanations for us

The first Genetics appointment we had was when george was 3 and was a waste of time, but then its taken us 7/8 years for george to be diagnosed and there have been many dr's and may appointments, so i dont think they knew what they were doing either, but since he has been diagnosed the information form the genetics team has been super helpful, we have annual appointments with them should there be any changes in the study of ED.

The Geneticist we see, meets us at our local hospital but he is from GOSH, so im not sure if they just seem to know more about ED at that end!

All the docs at the local hospital have had to have a teaching lesson from myself as to what ED is....We mainly attend GOSH now, unless George is having his ears cleaned and then we will go to our local!
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laura&george

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Number of posts : 8
Location : essex
Registration date : 2006-07-22

PostSubject: Re: Geneticists   Mon 24 Jul 2006 - 16:28

sorry rambled on a bit there!!! bounce
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scottgallacher

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Number of posts : 21
Location : Leicester
Age : 32
Registration date : 2006-03-10

PostSubject: Geneticist   Mon 24 Jul 2006 - 21:42

Hi,

Our little boy Ryan (aged 2 and a half) has X linked HED.

Our Geneticist was pretty good, explained the condition (which we had already found on via Google) and how it was that some of Eileen's male cousins had the condition but her brother's did not and none of the women in the family had any real symptons.

He also explained that there was a 50% chance that Daniel (now aged 9 months) could have the condition, or not, depending on your outlook.
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Lisa

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Number of posts : 36
Age : 39
Location : Warwickshire, UK
Age : 31
Registration date : 2006-07-22

PostSubject: Re: Geneticists   Thu 24 Aug 2006 - 21:28

I saw a geneticist last year she was really nice, She took some blood samples to determin which type but can I get the results back... no nightmare. I will keep calling until I get them tho!
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scottgallacher

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Number of posts : 21
Location : Leicester
Age : 32
Registration date : 2006-03-10

PostSubject: Re: Geneticists   Thu 16 Nov 2006 - 2:37

Hi,

Any joy with your results!
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king_andrea1

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Female
Number of posts : 4
Location : West Virginia, USA
Age : 26
Registration date : 2006-01-21

PostSubject: Re: Geneticists   Mon 20 Nov 2006 - 8:35

I also had no luck with the geneticist. My son,Shane, is two and pretty much from birth we knew he had HED. My brother is 24 and he was the only one affected until my son. We took Shane when he was one and the dr didnt tell us anything we didnt already know. Plus they didnt do any labwork or anything. I was very dissapointed by the whole experience.
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scottgallacher

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Number of posts : 21
Location : Leicester
Age : 32
Registration date : 2006-03-10

PostSubject: Re: Geneticists   Thu 13 Dec 2007 - 16:07

I think the key benefit from seeing the geneticist to get an official diagnosis.

Have you put in a claim for Disability Living Allowance (DLA).

It can take a long time, and you may have to appeal, but dependant upon the additional care needed you can claim.
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Lisa

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Female
Number of posts : 36
Age : 39
Location : Warwickshire, UK
Age : 31
Registration date : 2006-07-22

PostSubject: Re: Geneticists   Tue 14 Oct 2008 - 19:35

I went to see the geneticist again last week. It was really interesting! The misprint they have found on my gene is different to what they have found on other families they have tested. In December/January both my son and my mum are going to be tested to see if they have the same misprint as me
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