• Welcome, Guest. Please login or register.
    July 05, 2020, 12:58:11 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andythalpal@yahoo.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55311 Posts in 5912 Topics by 6212 Members
Latest Member: Pocatju

We love you, Lisa.
May you Rest in Peace,
knowing that your legacy lives on,
right here, and through all of us.
You're forever in our hearts.
« previous next »
Pages: « 1 2 Go Down Print
Author Topic: 2-day conference in Cairo (organized by Prof El Beshlawy Ped.Hematologist)  (Read 22988 times)
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #15 on: April 19, 2007, 07:05:32 AM »

Hi Andy

Is this by any chance retrodifferentiation which is being developed by TriStem in the UK?

I talked to my hematologist Professor El Beshlawy (organizer of the conference) today and yes it is the retrodifferentiation and she told me that she will try to make a seesion about this with the patients ( till now this lecture is for the doctors only) so that we can ask about this technique.

So please if any one has any question about this retrodifferentiation, post it so i can (hopefully) ask in this session
Take care
Manal
« Last Edit: April 17, 2009, 06:30:07 AM by Manal » Logged
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #16 on: April 19, 2007, 08:48:01 AM »

Hi Manal,

I am a bit lost, do you remember i told you about an arab doctor when i emailed you? her name was dr ILHAM ABUL-JADAEEL,what her assistant told us was a lot like retrodifferentiation.Now i am wondering that if we were wrong ,,but why did the govt accused her for using poor people for her experimentation  ,i wonder what would have been the results if we had started the treatment,, may be she was offering us a help?  i don't know,, please keep us updated..i am feeling STUPID.

ZAINI.
Logged

^*^Xaini^*^
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #17 on: April 19, 2007, 10:07:59 AM »

hi Zaini

You shouldn't feel that way because we should be 100% sure of what we offer to our children. So may be things had developed from the time  the study was conducted in Pakistan.

Anyway i am going to attend this lecture ( by the way the speaker will be Doctor Ilham) and will update you with what ever she says and i will ask if things have changed or developed from the time the study was done in your country.

By the way: I read this study and it said that only two patients died from other complications, so whom should we suspect the study or the government?Huh?Huh?Huh?Huh?Huh?Huh?Huh?
It i really confusing

Manal 
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8661


Will thal rule you or will you rule thal?


« Reply #18 on: April 19, 2007, 10:09:47 AM »

The government of India has also accused Dr Ilham of violating ethical guidelines by only using Indian patients in research into treating aplastic anemia. Under Indian law, parallel studies outside India must also take place. These accusations against the doctor are bureaucratic in nature and have nothing to do with the actual research. I suspect the same thing has happened in Pakistan. I don't think it's fair to say that the doctor is experimenting on the poor, when it is the poor who are most desperately seeking treatment and therefore are most willing to try a new technique, and there is also such a high percentage of poor in Pakistan. Our group has regularly seen desperate pleas for help from people in Pakistan and many have even turned to fake healers out of desperation. Thals in general have continuously volunteered for studies on new medications and techniques and those studying this technology will also find no shortage of volunteers. It should be noted that patients who died during the trials died as a result of complications from their conditions and not from the treatment.
Logged

Andy

All we are saying is give thals a chance.
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #19 on: April 19, 2007, 10:24:08 AM »

Hi Andy

I am really confused, could this mean that medical studies could be forged  and report incorrect findings to give credits for a treatment. Who should we trust?Huh?Huh??/

Manal
Logged
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8661


Will thal rule you or will you rule thal?


« Reply #20 on: April 19, 2007, 10:42:45 AM »

Hi Manal,

I don't think this shows anything negative about the trials of this technology. I think it shows more about the state of bureaucracy in many countries. These laws may have the noble goal of protecting that country's patients from being used as guinea pigs, but it has the unfortunate result of prohibiting research that isn't paralleled elsewhere. There are factors that help decide where trials take place and the cost of doing research in places like India and Pakistan is much less than what the same trial would cost in the west and may be a big factor in the choice of locations.
Logged

Andy

All we are saying is give thals a chance.
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #21 on: April 19, 2007, 01:03:39 PM »

Hi Manal,

Thanx for your understanding,really i didn't knew anything about Dr Ilham at that time , and when that accusations came, i had no resources to search whether they were right or wrong,nd her assistant, with whom we met,was not a medical doctor, but a retired banker,he told us himself, i wonder still sometimes that why didn't she hire a medical doctor, anyways she might be a very great researcher and every thing but we didn't know at that time,and like you said we should be 100% sure of what we offer to our children,Andy what ever you said makes a lot of sense, but please do tell me that how do u know that these accusations made by Indian and Pakistani govts were surely of bureaucratic nature, i know health condition here are really bad and everything,i won't deny whatever u said, only i want to be a bit more sure.

thanx

ZAINI.
Logged

^*^Xaini^*^
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #22 on: April 19, 2007, 01:38:52 PM »

Just thought you might wanna read this,


Quote
KARACHI, July 14 : Pakistani doctors have emerged to be the first to successfully apply Autologous Stem Cell Therapy in treating Thalassemia Major, a debilitating blood disorder that affects hundreds of thousands of people and kills several thousand children before they reach the age of ten.

B-thalassemia is a hereditary disease that impairs haemoglobin synthesis after birth leading to anaemia and dependency on blood transfusions – while repeated blood transfusion causes iron overload that eventually contributes to multi-organ failure.

The above-mentioned therapy, based on research undertaken by Muslim lady scientist of Saudi origin Dr Ilham Abuljadayel, comprises a procedure under which stem cells could be derived from patients’ own blood in very large volumes in a short period of time.

This can be done without any invasive surgery, growth factors, need for HLA matched donor or use of expensive and potentially dangerous immunosuppression,” the principal investigator of the study Dr Tasneem Ahsan, told the agency.

During the study initiated in February 2005 retrodifferential stem cells derived from the blood of 20 recruited patients with B- thalassemia major were infused back into them, after taking all due precautions.

“There is not only a statistically significant drop in blood transfusion requirement but no adverse effect have been seen in any of the patients as a result of the procedure, thus establishing its safety, Dr Tasneem Ahsan said.

She further mentioned that since the infusion of stem cells none of the patients have received any chelation therapy and despite this their serum ferritin, which is a measure of iron overload, dropped significantly in almost all patients.

“Fewer Transfusions and less iron load will lead to better growth and less organ damage thereby increasing the life span and improving the quality of life of patients,” she said maintaining that duration of beneficial effects will become more evident as the study progresses.

The very technique called “Autologous Retrodifferentiated Stem Cell Therapy”, an outcome of research, spread over a span of some 15 years, undertaken by Dr Ilham Abuljadayel has not only been successfully applied on Pakistani thalassemic patients but is also in process of being tried, again in Pakistan, for conditions as Diabetes Type One, Spinal Cord Injury, Muscular Dystrophy, etc.

Meanwhile, answering another question she acknowledged that the stem cells being used in the patients are derived from the patient’s own blood hence they do carry the original gene defect of B-thalassemia.

These stem cells would therefore be expected to be less robust than a normal stem cell and would have a limitation to their life span.

“This does raise the possibility of repeating the autologous retrodifferential stem therapy for continuing benefit in B-thalassemia patients,” Dr Tasneem Ahsan.

Yet, maintaining that the therapy is a major breakthrough, Dr. Tasneem Ahsan reminded that there has been a significantly high incidence of the very ailment in Pakistan, with an estimated 100,000 suffering from the condition.

“70 per cent of the children with B-thalassemia are estimated to die before the age of 10 years in our country, she reminded mentioning that given the prevalent cultural attitudes regarding blood transfusions, the life of a family with one or more thalassemic children is one of utter misery.

It may again not be out of context to remind that to reduce, blood-transfusion-induced iron overload the sufferers require regular chelation therapy which is expensive and most of the local patients are either not receiving any chelation or getting sub optimal chelation in addition to sub-optimal transfusion.

The suffering of the affected individual is compounded by the financial burden of the disease as well as the non-availability of regular blood supply and the prohibitive expense of regular chelation.


ZAINI.
Logged

^*^Xaini^*^
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8661


Will thal rule you or will you rule thal?


« Reply #23 on: April 19, 2007, 01:59:52 PM »

Countries with large poor populations have been passing laws to try to prevent testing of unproven drugs and treatments on their people, because often those people have been used as disposable by the drug companies (this was the subject of the excellent movie, The Constant Gardener). As a result, laws such as the one in India, requiring parallel testing in other countries, have been passed. The trials that Dr Ilham ran on aplastic anemia patients in India did not have a parallel trial elsewhere, thusly violating the Indian law. The one patient who died during this trial died from complications of aplastic anemia, which is a terrible disorder that is often fatal. The outcome of the trials is not what is the subject of the Indian concerns. It is that no parallel trial took place.

I think the fact that this technology is being presented at the upcoming conference in Egypt gives it even more credibility. Hopefully some new information about trial results will be presented there.

I don't think it can be easy for a parent or patient to agree to take part in a trial for some new drug or treatment without having a good idea of the risks involved. Caution is a good choice until more is known.
Logged

Andy

All we are saying is give thals a chance.
Zaini
Global Moderator
Supreme Member
*****
Offline Offline

Location: Karachi,Pakistan

Gender: Female
Posts: 3448


Life is too short to be perfect.


« Reply #24 on: April 19, 2007, 02:14:57 PM »

Hi Again,

Just doing a net search my self ,gathering information,tell me what do you guys think Huh?

Quote
For bold investors, their claimed scientific coup, made under the auspices of a company called TriStem, could earn prodigious fortunes for themselves and their backers. But if they are wrong, they will not only lose their shirts: they will have exposed what many scientists believe is fundamentally at fault in the epoch-making scientific field known as stem-cell research.

Stem cells are primitive living cells that can be artificially coaxed to grow into any type of specific cell or tissue in the body. Scientists are confident that stem cells will one day deliver cures for virtually any kind of organ, blood or tissue dysfunction. Stem cells are tantamount to medicine's philosopher's stone – the mythical alchemical process that turned dross to gold – offering astounding new prospects for people afflicted by a huge range of debilitating and life-threatening illnesses – including cancer, heart and brain diseases, spinal-cord injury and diabetes.

Stem-cell therapy promises stunning cuts in hospital and medical-care budgets. Expensive drug courses, postoperative and long-term care of the aged could become a thing of the past. Each individual would have a set of stem cells in storage matching their DNA. Treatment for a wide range of illnesses would involve injections of appropriately enhanced cells to replace damaged tissue or defective blood, or absent bone, cartilage and muscle, or degenerating brain and nerve cells.

But first, scientists must settle on the best way to acquire appropriate stem cells – and they must learn sure ways of differentiating them into the required tissue and cell types for therapy. Stem cells exist at different levels of purity and potency, ranging from pluripotent to multipotent. Pluripotent cells can in theory be turned into every and any kind of cell and tissue type, while multipotent cells are capable of being turned into certain restricted kinds of cells.

And this is where our Hampstead-based husband-and-wife team come in. Ilham Abuljadayel, a postdoctoral biotech scientist originally from Saudi Arabia, claims that she has discovered an infallible and cheap technique for changing white blood cells into perfect, pluripotent stem cells – the gold standard of stem-cell values. Her husband, Ghazi Dhoot, a physicist turned merchant banker, originally from north India, has patented the discovery and seeks to develop it to the point where TriStem (named in honour of their three children) can go public.

Abuljadayel claims that she can take half a pint of your blood and within three hours produce a large quantity of pure stem cells peculiar to your personal DNA. "What we're doing," she tells me, "is taking cells and turning their clocks back to make them young primitive cells, capable of becoming any cell or tissue type in your body." She calls the process "retrodifferentiation". At the same time, and this is the crucial point, she claims that she has already found ways of reprogramming these stem cells into a variety of specialised cells and tissues that could mend a damaged heart, treat Parkinson's disease and spinal-cord injury, and cure diabetes. And that's just the beginning.

So why isn't the world hailing her discovery and seeking to adopt it? The answer is in the fraught connection between stem cells, the complex development of the human organism from the embryo, and the pace at which establishment science moves when faced with new discoveries.
 

You can read the complete article on,

http://www.timesonline.co.uk/tol/life_and_style/article1002124.ece?token=null&offset=0

ZAINI.
Logged

^*^Xaini^*^
Manal
Global Moderator
Supreme Member
*****
Offline Offline

Location: Cairo,Egypt

Gender: Female
Posts: 3100

mother of thal intermedia child


« Reply #25 on: May 01, 2007, 09:51:27 AM »

Hi

This is the detailed program for the conference:

International Thalassemia Day
9 – 10 May 2007

Program of the Conference

1st Day 9/5/2007

09.00 – 10.00   Opening Ceremony.
Chairpersons:
Prof. Amal EL Beshlawy(organizer of the conference)
Prof. Aly. Taher



10.00 – 10.45
Plenary 1
Chairpersons:
Prof. A.S. Khalifa
Prof. M. Nasser
Prof. L. Ragab

•   Infusion of Autologous Retrodifferentiated stem cells in patients with Beta Thalassemia      (I. Saleh, Pakistan)

10.45 – 12.15
New Era in Stem Cell Transplantation in Thalassemia and SCD
Chairpersons
Prof. H. Kamel
Prof. Y. El Tombari
Prof. A. Kamel
Prof. E. Refky
Prof. A. Hadad

•   10.45 – 11.10   Haplo-identical mother to child transplantation in Thalassemia: Immunological Reconstitution                     (A. Isgro, Italy)
•   11.10 – 11.35   BMT in SCD         (M. Marziali, Italy)

•   11.35 – 11.55  Allogeneic stem cell transplantation (SCT) in patients with  B-thalassemia           (A. El Jefri )

•   11.55 – 12.15    Bone  marrow transplantation  in thalassemias              (T.Gafaar, Egypt)

12.15 – 12.45                Coffee Break


12.45 – 02.15
Hot Topics in Thalassemia and SCD
Chairpersons
Prof. A. Taher
Prof. S. Sheble
Prof. H. Soed

•   12.45 – 01.10   State of the Art Management of transfusional Iron Overload     (M. Cappellini, Italy)

•   01.10 – 01.35   Clinical  experience  in chelation therapy    (A. Taher  Lebanon)

•   01.35 – 02.00   Management of thalassemia intermedia  :Experience with Hydroxy urea and Butyrates      (A.El-Beshlawy     Egypt).
   
•   02.00 – 02.15   Discussion


02.15 – 02.55   
Plenary 2
Chairpersons
Prof. F. Hamouda
Prof. N. Kaddah
Prof. A. Moustafa
Prof. G. Mokhtar

•   Interactions between red blood cells and the endothelium in normal vascular biology and red blood cells pathology       (J. Elion, France)
02.55 – 03.15
Coffee Break


03.15 – 04.45
Updates in Management of SCD

Chairpersons
Prof. A.  Inati Khoriaty
Prof. H. Hassab
Prof. M. El Tagui
Prof. H. Gazaly

•   03.15 – 03.35  Sickle Cell Disease-Current Knowledge in the Pathophysiology ,Aassessment and Management of Pain  (A. Inati, Lebanon)

•   03.35 – 04.00 Cellular and Molecular Target of Hydroxyurea in Sickle Cell Anemia        (J. Elion, France)

•   04.00 – 04.20I Impact of transcranial Doppler immaging in diagnosis and folllw   up of CNS vasculopathy in SCD patients under HU (M. Eltagui, Egypt)

•   04.20 – 04.35 Pulmonary Hypertention in SCD: Is there any role to L-Carnitine.        (A. Elbeshlawy, Egypt Organizer of the conference)

•   04.35 – 04.45 Discussion

04.45 – 05.25
Plenary 3
Chairpersons
Prof. A. Nazir
Prof. M. El Dafrawi
Prof. S. El Gawhary

•   Plant Extracts and Fetal Hb Production                (R. Gambari, Italy)
                                    Lunch  05.25
 







2nd Day 10/5/2007
09 – 10
New Insights in blood Transfusion
Chairpersons
Prof. M. El Ekiabi
Prof. F. Mouftah
Prof. O. Abd El Hakim

•   09 – 09.25        NAT in blood Bank        (S. Eissa, Egypt)

•   09.25 – 09.50 The production of transfusable universal donor red cells     (F. Goubran, Egypt)

•   09.50 – 10.00   Discussion

10.00 – 10.40 
Plenary 4
Chairpersons
Prof. N. Kassem
Prof. N. Fadaly
Prof. M. Khalef

•   Abnormal Hbs leading to Thalassemia syndromes   (H. Wajcman, France)

10.40 – 12.10
Fetal Medicine in the Management of Thalassemia and Genetic diseases
Chairpersons
Prof. M. Abou El Ghaar
Prof. T. Gafaar
Prof. M. El Ansarry
Prof. I. Ramzy

•   10.40 – 11.00   Pre-implantation  Genetic Diagnosis: Egyptian Experience  (R. Mansour, Egypt)

•   11.00 – 11.20   Fetal Medicine in the new Millennium   (M. Momtaz,
•   Egypt)

•   11.20 – 11.40   Umbilical cord blood plasticity and ex vivo expansion condition        (M. Elansary, Egypt)

•   11.40 – 12.00   Prenatal diagnosis of Thalassemia in Egypt   (S. El-Gawhary, Egypt)
•   12.00 – 12.10   Discussion

12.10 – 12.30
Coffee Break

12.30 – 01.30
Endocrine Complications in ThalassemiaChairpersons
Prof. I. Ghaly
Prof. S. Jaouni
Prof. N. Nour

•   12.30 – 01.00   State of the art: Growth and endocrine complications in Thalassemia: The Ferrara Experience         (V. De Sanctis    Italy)

•   01.00 – 01.20   The Pattern of bone disease and its morbidity among Thalassemia patients treated at University Hospital in Saudi Arabia   (S. Jaouni,  KSA)

•   13.20 – 13.30    Discussion

 
13.30 – 15.00
Free Communication:
Chairpersons
Prof. N. Sabet
Prof. M. Assem
Prof. A. Gawad
Prof. A. Abou El Enien
Prof. O. Bakr
13.30-  13.45      Intermittent  intravenous high dose desferrioxamine therapy  in heavily  iron –loaded children with B Thalassemia major. (Y.Wal Oman)
13.45-14.00 ;Neurological  Disease in Beta Thalassemia      (A.Tantawy  Egypt)
14.00 – 14.15 :Phenotypic  variability  in Thalassemia intermedia     (E.El-Raoef Egypt.
14.15-14.30  :Rapid screening of B-Globin Gene mutationsby real –time PCR  in Egyptian thalassemic  children    (M.Aziz     Egypt)
14.30-14.45  :Immunological  evaluation   of the early post transplant period  in pediatric bone marrow allotransplantation.     (H.Abdelrazik  Egypt)
14.45-15.0:Visual function evaluation of Egyptian B-thalassemia major patients on long term desferal therapy.     (M.Abou El-Ela)


13.30-15.00
Meet the expert: Patient/Doctors Meeting
Chairpersons
Prof. V. Desznctis
Prof. R. Gambarr
Prof. A. Isgro
Prof. A. Taher
Prof. O. Seleem
Prof. S El Gawhary
Prof. A. El Beshlawy

 
15.00-17:00
Case presentation

Chairpersons
Prof. A. El Beshlawy
Prof. A. Taher
Prof. M. Naser
Prof. E. Abdel Raoef
Prof. F. El Rashedy

Presenters:
Prof. H. Hamed
Prof. K. Salama
Cons. Dr. N. Shaheen
Prof. A. Taher



        Lunch


« Last Edit: April 17, 2009, 06:50:54 AM by Manal » Logged
Pages: « 1 2 Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!