Re: Back from The Hague

[Guest guest]

Hi Everyone !

TORSTEN, HEATHER, I will check Dr. Cuppens details here at the University

Hospital in Leuven. It's the hospital were is followed and just five

minutes away from where I live. Just give me a few days.

I am sure the conference was very interesting ! It's good to know they are

working hard to find a cure. Torsten, do you have the dates for next year's

conference already ?

I have a question for everyone. How do you fight pseudomonas in your

bathrooms, kitchen etc... ? I hear all kind of different things. They

advised us to put vinegar in the bath, shower, toilets etc.. every

evening. But it damages the metal tubes of the bath etc.. So, we let the

water run a lot every morning and evening before comes close.

Talk to you later.

Liesbeth

----------

From: Torsten Krafft[sMTP:VB-Wertpapiere@...]

Reply To: cfparentsonelist

Sent: 15 June 1999 08:10

To: cfparentsonelist

Subject: Back from The Hague

From: VB-Wertpapiere@... (Torsten Krafft)

Hi!

Well, I am back from The Hague where the European CF-conference took place

and

now I have a backpack full of information brochures to read and I am 300

e-mails

behind, so it will take me sometime to get everything in my head and then

into

the comp.

I am very happy to have gone to the conference. I met some very nice people

from

Cystic-L there and it was really overwhelming to see so many intelligent

people

working together to find a cure for this damn disease. So from my point of

view

I can recommend to attend to such a conference at least once, although it

is

very stressful to follow all these scientific presentations for three and a

half

days without being used to the medical lingo very much.

I feel very sad to read about Laetitia's passing. In those last few months

she

was on the lists I was able to learn a lot from her posts. She seemed to

have

never lost her positive spirits. Laetitia has been an encouraging, young

woman

and I will miss her posts.

HEATHER, there was a speech from Dr. Cuppens from Belgium about

polymorphism in

CF, especially about R117H. Perhaps you can find his e-mail address in the

net,

he is from Leuven University. Or, LIESBETH, can you help us with that?

Sorry, I tried to understand what he was talking about, but I only got what

I

knew from you before about that mutation. So if you have more specific q's,

it

might be worthwhile to contact him. He seemed to be very interested in that

mutation.

And this post is from last week, maybe you can help that mother out with

your

knowledge about mutation variants.

>>I need your knowledge here. Sophie our 11 yowcf has only one

mutation known and a high sweat test. (85)

Her sister's blood work shows same mutation,

polymorphisms, t-tract variants and haplotype.

My question to you is does having the same haplotype as her cf sister

make her a cf person too? Why this is so confusing is that her sweat

test is normal (22). From reading cystic-l I've learned that a normal

sweat test doesn't mean too much.

Waiting hopefully for your thoughts on this.

Sophie's mom at sarault@...<<

CATHY nice to see you on a list again. Did not know that your husband left

because of 's CF. Just give me his e-mail addy and I will tell him

SOMETHING about being a CF-dad and coping with the disease!! I can't

believe it!

JENNIE sorry to hear that the lab is trying to frighten you again.

According to

european microbiologists the youngest cepacia-patient they know of is five

years

old, so the lab result is really odd. Re stenotrophomonas there is still

not

much knowledge. There is know strong evidence that the bug is really

dangerous.

The new European CF register, where they collect data from all european

CF-patients even showed, that patients culturing stenotrophomonas are

healthier

than those culturing nothing, but my personal opinion is, that that could

be a

statistical error, because there are not so many cases here.

DOTTIE looks like is and Fiona have very similar problems (or lack

thereof)

with CF. Hope our little ones will stay that way for a long time. BTW do

you

know that a shindledecker in german is a man, who covers a roof with

shingles.

We have some twenty families with that name (originally it is

Schindeldecker)

still living here in Germany, so if you are interested in genealogy, just

let me

know.

Okay, its a beautiful summerday here and I have a lot of work to do, so bye

for

now.

Torsten, dad of Fiona 2yowcf

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