Hello to you all!

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....

Hi Dore,

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

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.-

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!!

Hi Dore,

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.-

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

As I said: unbelievable.

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

Jos.-

Thanks for sharing infor here


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Hi Alex
  , 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

Thanks for sharing infor here


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

Thanks Mariam for your reply/information.

Jos.-