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.pdfAndy, 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.htmThe 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.htmI
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.htmhttp://www.talassemiaricerca.unife.it/engvers/home.htmAs 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