Thalassemia Patients and Friends

Discussion Forums => Greetings => Topic started by: alfreij on January 04, 2009, 11:18:16 AM

Title: AM JUST JOINING THE SITE
Post by: alfreij 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

Title: Re: AM JUST JOINING THE SITE
Post by: nice friend 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

Title: Re: AM JUST JOINING THE SITE
Post by: Manal 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

Title: Re: AM JUST JOINING THE SITE
Post by: Dori 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.