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Update on the Cairo Conference

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§ãJ¡Ð ساجد:
Hi Manal,

Thank you for your valuable contributions! :ty

Manal:
You are most welcomed Maha and Sajid, hope it could be of benefit to any one.

Back to the conference:

* I talked with Professor Ali Taher about the clinical trails of Hemaquest ( Dr. Suzane Perrine ) and he said that it will start after four months and gave me his contacts to be updated about the trail and to know when they will start it on children.

* In the conference, it was the first time to see a lot of patients as usually when I go to the clinic, i never meet anyone, but unfortunatly there were many families with children with all ages and also teens who from the first look you can tell that they are poorly treated. Latest statistics showed that in Egypt, up to 13% of the population are carriers and the recorded patients in different centers in Egypt are around 10,000 ( these are the recorede only ). It is estimated that every year 1000 thal major babies are born.

It is heart aching because, most of the patients are really poor and there are no resources. i can not forget an 18 years girl who was complaining that she can not find blood and when her father get donors it is difficult to have it too as they are asked to do blood test for blood saftey and they are poor to pay.
I heard many sad stories, it is really too hard and harch.

* In the parent/doctor session, Mr. Panos the president of TIF gave a very good speech about thal and it shouldn't conquer us but as i told many patients can't even find blood so the speech was a kind of luxury

* One of the things that really touched my heart was the tears that came in Mr. Panos eyes when i gave him my condolences in the memory of his son who had thal and left us on the 8th of May. That is why the international day of thal is on the 8th of May. May his soul rest in peace. It was the tears of the father that he couldn't hide

* I asked Dr. A.Eleftheriou (TIF), if there is a possibility of offering any sponsorship for Egyptian patients to attend the Singapore conerence as there is no sponsorship is offered her in Egypt from any assosiation or company at all. She said that it is possible and i have to send a letter requesting this to my assosiation and they could help me in this. So pray for me that this could happen, i hope so.

* Dear friend Kathy and Vic, most of the lectures about sickle cell anemia were really tough for me to understand especially that i am not much familiar with SCA so i am really sorry that i didn't include points about them, but when the abstracts and the lectures are ready on the ETA site, i will inform you as the could be of some benefits. There was an excellent lecture by Dr. Paul Telfer about new protocols in the ''Sickle cell pain management'' which i am sure you will be interested in


Those were bits and pieces from the conference, but there is some thing that i wanted to ask about  concerning a lecture on ''Coagulophathy in thalassemia'' as it was a really organized and good one but couldn't find the doctor in the break time but i got his address and will make an appointment with him as i have many things ai want to ask about.

Find below the list of  the other lectures given in the conference:

*EMBRYONIC AND MESENCHYMAL STEM CELLS Institute of Oncology Hacettepe University , Ankara – Turkey
IN  REGENERATIVE MEDICINE
Emin Kansu ,M.D.,FACP

*HEMATOPOIETIC STEM CELL TRANSPLANTATION FOR THALASSEMIA
Gaziev Javid
Mediterranean Institute of Hematology, International Center for Transplantation in Thalassemia and Sickle Cell Anemia. Policlinico Tor Vergata, Rome, Italy


*PURIFIED T DEPLETED PERIPHERAL BLOOD AND BONE MARROW CD34 TRANSPLANTATION FROM HAPLOIDENTICAL MOTHER TO CHILD WITH THALASSEMIASodani P, Isgrò A, Erer B, Gaziev J, Polchi P, Marziali M. Roveda A, Gallucci C, De Angelis G, Paciaroni K, Simone M, Alfieri C, Montuoro A, Adorno G*, Lanti A*, Isacchi G°, Zinno F° and Lucarelli G.


*Stem Cells in Hemoglobinopathies and Hematological Malignancies: A Jordan University Hospital Experience
Adeeb Al-Zoubi1, Mohammed El-Khateeb2, Abdallah Aweidi Al-Abbadi2


*Deferasirox ( EXJADE) The new oral Iron Chelator :Experience of Egypt

*Survival trends in thalassaemia major - The UK & Cypriot experiencePaul Telfer

*Advances in approaches for non-invasive prenatal diagnosis (NIPD) and preimplantation genetic diagnosis (PGD) of thalassemia.Dr. Joanne Traeger-Synodinos, Assistant Professor of Genetics, Laboratory of Medical Genetics, Athens

*Fighting Thalassemia; Bahrain's ExperiencesProf Faisal Alnasir FPC,MICGP,FRCGP,PhD
Professor of Family Medicine
Vice President
Arabian Gulf University
Bahrain


*Chorionic Villous sampling outcome in prenatal diagnosis of Thalassemia in Egypt


*RISK OF INFECTION THROUGH BLOOD TRANSFUSIONDr. Androulla Eleftheriou (Ph.D) Virologist – TIF Executive Director


*Growth and puberty in Thalassaemia
Nicos Skordis, MD, Andreas Kyriakou, MD
Pediatric Endocrine Unit, Makarios Hospital, Nicosia, Cyprus


*Current Understanding and Management of Sickle Cell Disease
Adlette Inati Khoriaty, M D
Children's Center for Cancer and Blood Diseases
Rafik Hariri University Hospital, Beirut, Lebanon


*PREVALENCE OF BONE DISEASE IN SICKLE CELL ANEMIA:  SINGLE INSTITUTE EXPERIENCE: JEDDAH KINGDOM OF SAUDI ARABIA.
Dr. Soad Khalil Al-Jaouni, FRCPC
Hematology Department, King Abdulaziz University Hospital, College of Medicine, Jeddah Kingdom of Saudi Arabia.


*Fetal Medicine: A new science for the new millennium

*The Effect Of Storage On The Recovery And Expansion Of Umbilical Cord Blood Hematopoietic Stem Cells


*RENAL FUNCTION IN ADULT Hb-H DISEASE
Leena Ong-ajyooth1, Sompong Ong-ajyooth2, Pensri Pootrakul1, Duangporn Chuawattana1, Sompong Liammongkolkul2, Surin Khanyok2
1Department of Medicine, 2Department of Biochemistry, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok

*Controversies in management of Thalassemia Intermedia: Experience from Hb Dhofar.
Yasser Wali MD FRCPCH, Shahina Daar MD.
College of Medicine, Sultan Qaboos University, Oman


*LIFE THREATENING  INFECTIONS IN THALASSEMIA  ( This is very good lecture for patients who have gone through splenctomy, it tells you exactly what you should do in case of infection, immunizationas and others ......)PROFESSOR AZZA ABDEL GAWAD TANTAWY
PROFESSOR OF PEDIATRICS AND PEDIATRIC HEMATOLOGY
AIN SHAMS UNIVERSITY


*Abnormal glucose tolerance in beta-thalassemia patients: possible risk factors

*Opportunist protozoa in patients with β thalassaemia on regular blood transfusion.

*Erythrocyte Phosphatidylserine Exposure in Sickle cell Disease Using Fluorecently-Labelled Annexin V: Relationship to Coagulation Activation and Fetal Hemoglobin

*Haemochromatosis gene mutation H63D is a risk factor for iron overload in Egyptian beta- thalassemic children


*N-TERMINAL PRO-BRAIN NATRIURETIC PEPTIDE LEVEL AS A NOVAL DIAGNOSTIC MARKER OF PULMONARY HYPERTENSION IN SICKLE CELL DISEASE


That is all for the conference, hope i didn't forget anything, wish all the best

Manal

Andy Battaglia:
Manal,

This was a great group of topics addressed by many of the top researchers and doctors in the world. Thank you for the updates and I hope all this information will soon be available online.

Your point about poverty and lack of treatment is an extremely important one. This cannot be stressed enough. You mentioned Egypt with a carrier rate of 13%. Pakistan is 6 %. India, 3 %, which translates to 40 million carriers in India, alone. Thailand is 30%. Yes, 30%. The common factor is that each of these countries is in the same position in terms of funding and realistically, we must admit that most majors are not getting the care they need. In India, it is estimated that 10,000 children die every year from lack of treatment for thalassemia.

The priorities of the human race are just plain wrong. My own country is the biggest embarrassment of all. The military budget of the US is bigger than the military budgets of the entire rest of the world combined. And why? So we can be prepared to face irrational fears? Not really. That is just the excuse that is used to justify it to my gullible countrymen. We're fighting in Iraq so we don't have to fight "them" in the streets of the US. Really? People do actually believe this nonsense. My own brother has told me this, but he also told me the Muslims would kill me if I went to Dubai and the Maldives. Somehow, I escaped death. This foolishness needs to end if we are ever to do the things this world really needs. The US was in no danger from Iraq, but Iraq does have a lot of oil and the vice president's company landed some massive contracts because we went to war. When will we wake up and say dammit! No more!

Not only does it pain me to know how many people on this earth cannot get even basic medical care but it pains me greatly to know that people supposedly acting on my behalf are working hard to make this world a worse place. And it really pains me to see how my countrymen think of people from other countries. Humanity needs to wake up while we still have a chance to change. Humanity is its own worst enemy.

Thalassemia is just one area that is severely underfunded. How much research could be done with the money used to build one bomber plane? That alone would fund research into gene therapy and HbF inducers for many years to come. Can we build fewer weapons and use the money to solve the problems confronting real people? Can we choose life over death? Charity over greed? Each of us in our own lives needs to pledge to never fall for the lies of politicians who lead us down the paths of fear and destruction. Each of us needs to wake up and see our fellow humans as our brothers and sisters. We can never become complacent as long as one child goes wanting.

I'm sorry to get off topic but Manal's words are felt deeply within my soul. We have to do better for these people.

Andy Battaglia:
For some perspective, the cost of one B-1 bomber plane is around $300 million dollars. I would love to see this money divided between Dr Sadelain and Dr Perrine. I would love to see another plane not built and the money be entrusted to Dr Vichinsky so he could continue expanding thal care in India. And so on. Hopefully our next president will have a soul.

Sharmin:
Manal,

Thank you for all of this valuable information.

Sharmin

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