Thalassemia Patients and Friends

Discussion Forums => Working Towards a Cure => Topic started by: Camilla on May 09, 2010, 10:20:15 AM

Title: Calling Manal and Zaini
Post by: Camilla on May 09, 2010, 10:20:15 AM

Hi,

I wanted to find out all I could about Dr Ilham and retrodifferentiation -- for my nephew. Any way of contacting you?

Regards

Camilla

Title: Re: Calling Manal and Zaini
Post by: Zaini on May 10, 2010, 04:19:00 AM

Hi Camiliia,

You can PM me or email me,although it was a long time ago i found out that the procedure was being done here,i don't know if its done here anymore.

Zaini.

Title: Re: Calling Manal and Zaini
Post by: Manal on May 11, 2010, 03:25:37 PM

Hello Camilla and welcome to the site

Sorry for my late reply cause i didn't check the site from last Saturday.

Speaking of retrodifferentiation, the last time i met Dr. Elham, it was in the conference of 2009.

During her work, she found that infusing stem cells in patients ( they were patients having other diseases other than thal) has activated the production of Fetal Hb and this production of fetal Hb remained for about 6 months. From here came the idea that it can help with thal.

The  procedure is simply collecting the white blood cells of the patients and retrodifferniate it back (lab work) to stem cells where they will be injected again in the patients' blood.

This procedure is not done in Egypt as it is not approved by the ministry of health because it is not FDA approved yet, but i know a doctor here who is Dr. Elham assistance or represntitve who send her cases from here to be done in Jordan.

I know a case who went through this procedure, she was an 11 year old girl thal intermedia but transfusing, with Hepatits C and problems in growth.

She did the procedure in Jordan and costed $15,000. The result was that her HB was stable at 7 (didn't go over 7) but her ferritin dropped, the velocity of growth became much better and the general liver condition became better too.

What i know is that her HB started to drop again, but i really didn't follow after this. May it will be a good idea if i will ask about her again

So in my opinion, this procedure can help in other stuff that could relate to the presence of thal but i didn't observe that it has an effective impact on hb increase (that is my personal view)

Please feel free to ask anything that i missed mentioning

manal

Title: Re: Calling Manal and Zaini
Post by: Dori on June 01, 2010, 11:41:45 AM

What an interesting thing. Thank you for asking Camilla.

Title: Re: Calling Manal and Zaini
Post by: Manal on June 02, 2010, 12:40:01 AM

Camilla, unfortunatly i can not reach the girl's family. they never answer the phone and i don't know their address , but i wil keep trying

manal

Title: Re: Calling Manal and Zaini
Post by: Camilla on June 08, 2010, 12:57:37 PM

Thank you Manal -- I appreciate it.

Or if you have a contact for the Dr in Egypt arranging treatment in Jordan. That could help too.

Best regards

Kamila

Title: Re: Calling Manal and Zaini
Post by: Manal on June 08, 2010, 01:25:22 PM

I have ssent you his number in a PM

manal

Title: Re: Calling Manal and Zaini
Post by: mohamed on June 08, 2010, 04:34:28 PM

hi Manal
can you send the no. for me too?

Title: Re: Calling Manal and Zaini
Post by: Manal on June 09, 2010, 01:04:47 PM

Hi Mohamed

I have sent you the cell phone of the doctor by sms :wink

manal