Update on the Cairo Conference

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


 

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.

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

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.

Hi Manal,

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!

Thanks all for your replies.

Zaini and Sajid  i think it is a good idea to check all the information that i wrote through the center  in Pakistan or through the friend of your cousin Sajid. At the end, this is a new technique and we want to make sure that it is safe. 

Sharmin,I think that having the opinion of your doctor will e important too. Though this procedure sounds good and with no side effects, but i am still afraid.

So please if any body has the ability to double check, let us know

Sajid, i agree with you about the cost, but maybe this is because the procedure is at the begining.

Andy,i really don't know if there is any online studies other than the one that was done in Pakistain, found in this link

 http://www.thescientificworld.com/headeradmin/upload/2006.01.229.pdf

Andy, concerning the natural HB F induction, the lecture of Prof. Gambari was really a little bit scientific. But what i can confirm is that he talked about Angelicin, Rapamycin and he mentioned resveratrol as well. By the way, he was impressed when i told him that i am giving it to Ahmad and told me with other doctors who were standing that he didn't expect that this would be known, so thanks Andy for your advice or i should say thanks Professor Andy

http://www.talassemiaricerca.unife.it/engvers/results.htm

The results suggested that rapamycin, when compared with cytosine arabinoside, mithramycin and cisplatin, is a powerful inducer of erythroid differentiation and gamma-globin mRNA accumulation in human leukaemia K562 cells. In addition, when normal human erythroid precursors were cultured in the presence of rapamycin, gamma-globin mRNA accumulation and fetal haemoglobin (HbF) production increased to levels that were higher than those obtained using hydroxyurea.

Also all his studies confirmed that angelicin induced  more quantity of HB F when compared to hydroxyurea.
http://www.talassemiaricerca.unife.it/engvers/results.htm
I

n addition, when normal human erythroid precursors were cultured in the presence of angelicin, increases of gamma-globin mRNA accumulation and fetal hemoglobin (HbF) production, even higher than those obtained using hydroxyurea, were detected.

Most of his studies are in vitro rather than in vivo ( as i understood), so there is still time before anything would be availabe to public.

I asked if i can send Ahmad's Blood sample to him and he agreed, buti have first to arrange this with my hematologist first.

I think Andy it will be better to have a look on his sites as many things are very scientific and i am afraid i will say something wrong. So the link isL

http://www.talassemiaricerca.unife.it/engvers/Fetal%20Hemoglobin%20Project.htm
http://www.talassemiaricerca.unife.it/engvers/home.htm


As for the other lectures, Professor Maria Cappellini gave an excellent lecture comaring desferal, L1 and exjade. It sumed up every thing, who are the suitable patient to every medicine, side effect of each, when to stop, how each medicine chelate iron, effect of chelating other metals with iron like cupper and zinc, .............etc

Prof. Vincenzo also had a good lecture about his 37 years expierence about growth and endocrine complications in thal. He spoked in details about each gland.

We had also Dr. A. El Ghafry who talked about BMT in Saudi Arabia and there last statistics comared to Prof.Lucarelli and why they are using the seatle protocol rather than the italian protocol.

Also Dr.Heba abdel Razak gave an important lecture aout building up the immunity in the first 100 days from transplant  and the indications of this comparing the related bone match donor and unrelated BM donor.  I guess this doctor will be an emminent very soon. Last year she took the award of the youngest scientist in Europe 

Two of Prof Lucarelli group talked about haploidentical transplant and the difficulty of the reconstitution of the immune system. Also they talked about BMT in sicklecell anemia

Many lectures talked about Sickle cell anemia. One of the important ones was the role of L-Carnitine is decreasing Pulmonary hypertension. Also they talked about Doppler imaging in diagnosis of CNS Vasculopathy in Sickle cell Anemia under Hydroxyurea
Also Dr Jacques Elion from France talked about cellular and molecular targets of HU in sickle cell and pain management. He mentioned that sickle cell is the first blood disorder in France

Many lectures talked about intermedias, blood banks ,production of transfusable universal donor, PGD,fetal medicine,abnormal HB leading to thal, umblical cords, neurological disorder in thal, bone diseases,using real time PCR and visual function evaluation after long use of desferal..


I contacted the Egyptian Thal assosiation to get the CD of the conference. AS soon as i buy it , i will download all the lectures here on the site so every body can read them

At the end of the conference, four professors talked about unfamiliar case studies. on talked about a patient who have 4 normal siblings and he is a thal major with almost no medical care. He entered the university hospital with a ferritin of 15000 and he almost transfuse every 25 days. After two years the ferritin went to the 2000s but what annoyed the doctors was the very high level of platlets that passed million in their count and had a big thrombosis in the herat. They discussed the protocol of treatment and many other things. But the impotant thing that could interest you is that this patient inherited from the mother a genetic disorder (other from thal ) that causes  avery high count of platlets andtherefore thrombosis. That is why his mother had 3 or 4 abortions due to this disorder that cause thrombophilia. It was said that this mutation is wide spread  and is seen a lot.

They also talked about the first patient in the world ( 3 years old girl ) to have thal and cholestasis and they all didn't know what isbetter for her, liver transplant spleenectomy, blood transfusion, or...


I know you should be bored from this long post  , ut i really wish that you wereall with me

Manal


   

I know you should be bored from this long post

No, not at all. Please continue to post the details at your convenience, as it is quite interesting.

Take care, Peace!

Thanks Sajid. Soon i will post the detailed lectures.

Andy, did you find anything interesting in Professor Gambari's site

Manal

Hi Manal,

Professor Gambari's site is highly technical in language, but I found the direction of their research to be very interesting, regarding the induction of fetal hemoglobin in human precursor cells.

from http://www.talassemiaricerca.unife.it/engvers/projects.htm

Induction of fetal hemoglobin (HbF) in adults
The aim of this project is the identification of novel molecules able to induce erythroid differentiation and expression of HbF in erythroid precursor cells isolated from peripheral blood of normal subjects and b -thalassemia patients. In addition, we will continue our study on molecules that we were able to demonstrate as HbF inducers.
Therefore, the project is devoted to the identification of new HbF inducers, to the analysis of analogues of mithramycin, tallimustine, angelicin, rapamycin, with the aim to identify compounds with high activity in induction of HbF and low toxicity. This study will be conducted on erythroid precursor cells from normal subjects, b -thalassemia patients, and patients affects by sickle-cell anemia.

Hi

Finally all the presentation and lectures of the Cairo conference are downloaded on this link, i  am sure many will bebfit from any of them.

The link is:

http://www.thalass-eg.com/9th.html


Take care
Manal

Interesting

Thanks Manal.

Thanks Manal.
That was interesting reading materials.It made me more confuse than ever.Our body cells are so complicated ,still I'm happy that I  could access  this information ,Knowledge is bliss.I now undestand a bit more about my sickle cells.

Good luck with your son treatment.
My Prayers and love always
Kathy