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Update on the Cairo Conference

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Manal:
Hi everybody

I really missed you all the last couple of days. I attended the conference on the 9th and 10th of May. It was really a very successful one with great Professors and advanced topics.

I will be posting the slides of each lecture as soon as they are ready . As for now i will comment/quote on some of the lectures that i attended.

One of the most imprtant lectures was made by Professor Ilham Saleh: Infusion of Autologous Retrodifferentiated stem cells in patients with Beta Thalassemia     

As we discussed this before in:   http://www.thalassemiapatientsandfriends.com/index.php?topic=798.15

Dr. Ilham mentioned some impotant facts such as:

*This technique is considered a cure for acquired diseases and a treatment for genetic diseases

*She used this procedure in diabitis with excellent results, thal, MS, SCA, aplastic anemia, muscular dystrophy

* In thal it is considered a treatment because from 6 to 12 months after the infusion, HB F production will switch off ( this was done on thal major)

At the same time, three thal intermedia have gone through this process and they became tranfusion independant for one and half year. When she was asked about the frequency of infusion in thal intermedia, she answered that this was done from one and half year and till the moment the HB F  did not switch off. The patients are checked frequently but she can not answer when will be their second infusion

* The infusion reduced mean blood transfusion, increased mean fetal HB synthesis, lowered ferritin, increased MCV, MCH and MCHC

* When asked about side effects she said ''NONE'' and added that an asprin can have a more side effect more than infusion of autologus retodiff. stem cells. She said ,'' I have gone though this process by myself and i am still alive''

* Concerning the age, this procedure is not done to children under 3 years so that an adequte number of blood cells can be collected

* The cells of a fully matched sibling can be used and only at this point it will considered a cure and not a treatment ( in this case the patient will be exposed to chemotherapy)

* the process takes from 6 to 8 hours where the blood is collected from the patient, white blood cells will be retodifferinated while red blood cells and platlets will be separated from the blood and infused agin into the patient's body. Usually the results can be achieved in weeks.

* This process is being done now in London, Jordon and Saudi Arabia (restricted only to the royal family) which i guess it is not fair. In Jordon it costs $6000, but in London it costs more but don't know how much exactly

* In the second day i met by coincidence an Egyptian doctor who met Dr. Ilham abroad and wanted to intoduce this new technique here in Egypt. He is faced with buracracy and routine in the Egyptian Ministry of Health and agreed to let me call him in two weeks to tell me how this will go on and whether he will be able to accomplish this or not in addition to the estimated budget if done in Egypt. 
 I discussed with him what Zaini told us about the study and how it was banned from Pakistan. He told me that he is sure that this study is approved in Pakistan now and it is being done in one of he centers. I asked him to get me the address of this center and he agreed to let me call him after one week to give me the address.

*My hematologist encourges me so much to do this process to Ahmad and thinks that it is better than other chemical Hb F inducers and when i discussed that it may not last more than18 month or may be little more, she said who knows he ''may'' maintain it more and i have nothing to lose since there are no side effect and no pain involved.

* After the lecture ''Plant Extracts and Fetal Hb Production'' by    (R. Gambari, Italy),, Dr. Ilham suggested that they can  work together with him and give the patient natural HB F inducers after the infusion as it might help in delaying the switch off of the HB F production in thal.


I guess i will be emailing Dr. Ilham soon as i have many questions before considering this process  as a treatment for Ahmad. I couldn't ask her directly cause she didn't attend the second day of the conference as she had to travel early. By the way, she lives in London.


I was intending to give you some brief on each lecture, but i guess that I talked too much. So i will give you a little break and see you soon in the next post

manal


 

Zaini:
Hi Manal,

I am so happy that the conference went that well,,and i am soooooooooo excited about thia retrodifferentiated stem cells infusion, and if it's still done in Pakistan,let's get more details about it,,i know about the center where she was doing this procedure at that time,,but don't know whether that's done there now,, i'll check it out,i'll check about the cost also, let's all pray about this system to work for our innocent kids and for every thal.

Love for all.

ZAINI.

Sharmin:
Manal,

We missed you too!
Thank you so much for sharing this information with us.  This is so exciting!  I hope that it works with your son.  I will inquire with our doctor about our son too.  Let us know what you decide to do. 

Sharmin

Andy Battaglia:
Manal,

This is really exciting that retrodifferentiation is now actually being offered. I would love to see some patient histories. Do you know if any have been posted online? I am also eagerly awaiting your other reports and would like to know what's new in using plant extracts to increase fetal hemoglobin levels. If it decreases transfusion frequency, it is of great importance to thals.

I am so glad that both Manal and Christine have had such positive experiences at thal conferences. I would recommend conferences to anyone interested in learning about thal and the most up to date treatments, and also for meeting some really great people.

§ãJ¡Ð ساجد:
Hi Manal,

:welcome back!

Thanks for the update. It's really nice to know that the retro stem cell tech. is continued being researched. I will definitely ask my cousin again; whose colleague was on the panel doctors who got banned last time, about the restarting of the experiment in Pakistan and all possible detail of the progress.

I'm a bit concerned about the cost since it is a treatment for Major and not a final cure. It's really hard to dig deep in the pocket every six month or so for $6000.

Anyway, some progress is better than no progress at all.

Take care, Peace!

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