Re: Our Inheritance, Our Future: Realizing the Potential of Genetics in the NHS/ Barb

[Guest guest]

Barb,

'When I read this some time ago, I was impressed, until I found the list of

those on the " Advisory Panel; "

checking your link, this is on p93.

Our family have seen one of these geneticists. When our eldest daughter was

expecting, he told her, " It doesn't matter if your baby has a connective tissue

disorder, as babies don't do very much. " An ultrasound scan had shown our

daughter was expecting a baby girl, so he also told her this little gem, " Girls

don't play rugby, so it doesn't matter if she has a connective tissue disorder. "

Re-assured by this, & his refusal to examine myself, & eldest daughter, & his

statement that he had checked himself out for Marfan syndrome, as he's over 6',

but our son, although tall, & thin, he thought would develop a " 6 pack, "

therefore he didn't want to " label " him, as he only has a very, very, mild

connective tissue disorder,....as a family we unanimously vowed never to see him

again.

Unfortunately, his notes followed us around in our attempts to get a diagnosis.

Fortunately we have met some Drs. that just go off the GPs referral, & read my

notes on our family medical history, & presumably don't ask for the previous

notes. On some recent occasions, he hasn't been aware of the Drs. we've

consulted, so we have made progress in getting some family member's diagnosed.

So, of course, I'm assured that the future of genetics is in safe hands, given

the quality of geneticists in the U.K.

Mike Pope, a geneticist specialising in connective tissue disorders, is an

exception to this rule,

Gail,

North Yorkshire, U.K.

[Guest guest]

Thanks for sharing, Gail. I hadn't formed any opinion on the document as I

haven't finished reading it yet. But, since it does have to do with the

policies to be in place, I thought it may be useful information to those of

you in the UK.

I actually wasn't looking at it for the topic itself but for the format of

the document. My communications class assignment is to find 2 white papers

and bring them to class on Thursday. While searching for white papers, I

found this one and thought I would pass it along in case anyone was

interested. Fortunately, I found 2 much shorter ones to print for class.

-Barb

[Guest guest]

Thanks for sharing, Gail. I hadn't formed any opinion on the document as I

haven't finished reading it yet. But, since it does have to do with the

policies to be in place, I thought it may be useful information to those of

you in the UK.

I actually wasn't looking at it for the topic itself but for the format of

the document. My communications class assignment is to find 2 white papers

and bring them to class on Thursday. While searching for white papers, I

found this one and thought I would pass it along in case anyone was

interested. Fortunately, I found 2 much shorter ones to print for class.

-Barb