Hello to you all!

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Offline Dori

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Re: Hello to you all!
« Reply #30 on: May 05, 2009, 12:47:56 PM »
I haven't time to answer your message. I should be very busy with study at the moment, but i am now here...

Dutch:
Je moet mmol/l x 1.6 (of 1.8) vermenigvuldigen en dan krijg je gl/dl. Desondanks blijft het lastig om steeds terug te rekenen. Vermenigvuldigen of delen met 2 is natuurlijk iets makkelijker :)

Aha, Sickle Cell Center in Rotterdam. You really should contact the organisation for Sickle Cell and Research, because they are great. I am a member too (this is a Dutch organisation!) and at the moment they are busy with the websites. Hmm, deze werkt misschien nog wel http://www.thalassemie.nl/index.htm Je kunt ze bellen, maar ik je anders ook wel een emailadres geven.

Succes, Dore

P.S. I still haven't read all message, though I must warn you: not all the tests are aviable in the Netherlands. This makes me feel sad too, but more angry. But I have heard that MRI (it has a name, help me) will be ready this summer in the Netherlands. Though I am not sure, because OSCAR hasn't heard anything of it....

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Offline Jos.-

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Re: Hello to you all!
« Reply #31 on: May 05, 2009, 08:37:33 PM »
Hi Dore,

Thanks for your reaction. I'm a member of OSCAR too, only just recently. Have a problem paying digitally my membership fee.  :huh

You know the Sickle Cell Center of Erasmus MC in Rotterdam? Have you been there? Do I get it right that for example a MRI is not possible yet? What kind of other tests are not available yet in The Netherlands?

Well, don't let me distract you any longer from your study duties. Give it a try, good luck with it!

Cheers,

Jos.-

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Offline Dori

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Re: Hello to you all!
« Reply #32 on: May 16, 2009, 11:36:37 AM »
How went your consult by the Doc?
I hope you aren't too dissapointed. I am sometimes, because all the things they talk about here. Just read that someone said the usually yearly MRI scan.... I don't think so!! I am pretty lucky to say as Dutchy that I had my last in jan 2002. Organized by my doc in that time by a private research institute... No joke! :p   Desalniettemin: Have a nice weekend!!

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Offline Jos.-

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Re: Hello to you all!
« Reply #33 on: May 17, 2009, 04:20:46 AM »
Hi Dore,

Quote

How went your consult by the Doc?



Thanks for asking! My experiences last Friday with my new doctor are here to cut it across http://www.thalassemiapatientsandfriends.com/index.php?topic=2855.new;topicseen#new. I wasn't disappointed at all as you can see.

But let's wait for my visit to the Sickle Cell Center next August before getting overoptimistic. My new doc is acquainted with, did research and wrote articles together with Anita Rijneveld, the hematologist-internist I'm going to meet then. Sounds good to start with.

Your last MRI in January 2002? Unbelievable. Is the management of blood diseases in The Netherlands that far behind compared to foreign countries?

The same goes for you: have a nice weekend!

Jos.-


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Offline Dori

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Re: Hello to you all!
« Reply #34 on: May 17, 2009, 01:24:51 PM »
It is. So far as I know I am the only one who had a MRI. Btw the ferriscan is located in Hamburg. European law (can) give us the permission to go to a foreign country to have test done who aren't available in country of origin.
You got the " europese overkoepelende patientenorganisaties' . I will ask my father; i can't remember where my notes are from the 'zeldzame ziekten DAG'.

I should have write this in Dutch!!!


edit at monday 18 May
« Last Edit: May 18, 2009, 10:18:40 AM by Door »

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Offline Jos.-

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Re: Hello to you all!
« Reply #35 on: May 18, 2009, 03:13:25 AM »
As I said: unbelievable.

Thanks beforehand for the information about the Éuropese overkoepelende patiëntenorganisaties'.

Jos.-

Re: Hello to you all!
« Reply #36 on: August 03, 2009, 09:22:28 AM »
Thanks for sharing infor here


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Offline nice friend

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Re: Hello to you all!
« Reply #37 on: August 03, 2009, 11:01:41 AM »
Hi Alex
 :welcome2 , i hope you'll find this forum more useful , keep visiting the forum  and keep posting n stay in-touch with us
 
best rgerds
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Tedi

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Re: Hello to you all!
« Reply #38 on: August 04, 2009, 12:58:58 PM »
Thanks for sharing infor here


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Hi Alex nice to meet you.I hope u will find new friends here.

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Offline maryo0m

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Re: Hello to you all!
« Reply #39 on: August 05, 2009, 01:02:47 AM »
Hello Jos  :hugfriend

Im Mariam from Kuwait
Im glad You found this group and joined Us you have no idea HOW HAPPY I AM TO SEE ALL THALS HERE :biggrin


well about exjade: I tried it for a year but one of the side effects for me was vometing (sorry to mension that)

I will post some pictures for you in this group of exjade and its Kit

for me it didnt work out because it made me too sick... plus there are major side effects like liver damage and if u ask me id say id rather have more iron than a damaged liver in the future...

Im using desferal now and my iron level is good thank god
there is also a tablet called ferriprox some thals in kuwait combine it with desferal

but the problem with ferriprox is that it decrease your white blood cell counts so u have to be carefull every thing has side effects for sure id say  stic with desferal so far so good and safe  :wink


WISH U THE BEST,

MARIAM

 
------------Spread your wings and fly-----------

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Offline Jos.-

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Re: Hello to you all!
« Reply #40 on: August 05, 2009, 04:56:40 AM »
Thanks Mariam for your reply/information.

Jos.-

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Offline maryo0m

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Re: Hello to you all!
« Reply #41 on: August 06, 2009, 12:07:35 AM »
You are most welcome Jos :biggrin
------------Spread your wings and fly-----------

 

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