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AM JUST JOINING THE SITE

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Offline alfreij

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AM JUST JOINING THE SITE
« on: January 04, 2009, 11:18:16 AM »
 dERA ALL AM JUST NEW PERSON WHO IS AM AS AFATHER OFA CHILD WHO HE HAVE (PURE RED CELL APLASIA)- BLACK FAN DIAMOND  - THERE IS ANY BODY KNOW ANY THING A BOUT THIS KIND OF SICKNESS. ALSO AM AS FRIND OF KHALIFA WHO IS ADVISE ME TO JOIN THIS SITE ..
                                               

                                                                  MOHAMMAD ALI ALFREIJ
                                                                  STATE OF KUWAIT
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Offline nice friend

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Re: AM JUST JOINING THE SITE
« Reply #1 on: January 04, 2009, 11:42:29 AM »
Hi Al-Freij ,
 :welcome to the Family , its nice to have you here , hope to hear more from you , please keep in-touch with us ... and keep posting ...

Best Regards
Take Care
Umair
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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 Manal

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Re: AM JUST JOINING THE SITE
« Reply #2 on: January 04, 2009, 12:27:20 PM »
Hello alfreij and welcome to the site.

This is the link about facts concerning the black fan diamond
http://rarediseases.about.com/cs/blackfandiamond/a/072002.htm

Tell us more about your son, are you giving him Corticosteroids or do you depend on blood transfusion??


manal
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Offline Dori

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Re: AM JUST JOINING THE SITE
« Reply #3 on: January 04, 2009, 01:47:49 PM »
Hey,

I dont have black fan diamond, but I know what it is. I got a rare anemia called pyruvate kinase deficiency.
Can you tell us something about your son's treatment. I know a few Dutch persons with bfd. If you like, I can ask them to contact you. I think they would like to tell you something about their treatment. (I am not sure of they speak all English, but I will ask)


p.s. This a great site! I have learn a lot of new things since I join them this autumn.
« Last Edit: April 19, 2011, 11:15:59 PM by Dori »
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