Panos Englezios President i TIF dhe Alfred Papuçiu
By Alfred Papuçiu
Diary of a self-taught « professor » of Thalassemia
I began this diary, since 1981, when I heard, for the first time, about Thalassemia, an inherited disorder. It was a discovery for me. Year by year, I noted all about this hereditary illness and today I decided to give you, my reflections, my love, my experience and to express my gratitude for all of them, who done and continue to give from their live, for a better treatment to fight Thalassemia, and perhaps we will see a day a « cure for Thalassemia ». Also for the other genetic illnesses and in general, for the Haemoglobinopathies illnesses. About 100,000 babies worldwide are born with severe forms of thalassemia each year. Thalassemia occurs most frequently in people of Italian, Greek, Cyprus, Albanian, France, Great Britain, USA, and Middle Eastern, Southern Asian and African Ancestry. All the diary contain my personal notes and some times, a doctor, a professor, I can imagine, perhaps will tell me : so, it is a good diary, but also, it was better to write more about this treatment, concerning the chelators, the transfusions, the transplant of steam cells, the umbilical cordon, the gene therapy.
I now that the best book doesn’t exist, because each human is not perfect. But as a Christian that I am, and as a Muslim that are some of my friends, we all together will find until the end of our life, step by step, our best words to express our experience, in the common struggle against Thalassemia.
First of all, I wish to express my gratitude to the staff of « Cooley’s Anemia Foundation » in New York, who opens their door for me since 1984. After, I heard from CAF that in Europe exist another successful Federation, who cover the struggle against Thalassemia: the Thalassaemia International Federation (TIF) in Cyprus. Also, I read the fantastic book « About of Thalassaemia », written by Dr Androulla Eleftheriou, Scientific Director of TIF.
During 25 years, I had and I continue to have the support of the all doctors in many countries, who give me the Hope for the near future, in the struggle of the treatment of Thalassemia. The history of Thalassemia is closely related to the word Thalassemia originates from a Greek world « Thalassemia » which means sea. Other names for Thalassemia are: « Cooley’s Anemia », « von Jaksch anemia », named after the American physicians who first diagnosed it or sometimes called « Mediterranean anemia ». First of all, the history of Thalassemia is closely related with the United States, where the doctor Cooley discovered this illness, but also related to the island of Cyprus. I wish to mention, especially M. Panos Englezios, Chairman of Thalassaemia
International Federation, who received me in Limassol on March 2004, and I express him my all gratitude for encouraging me to continue our common struggle against Thalassemia. No words seem appropriate to describe the heavy veil of pain that has fallen upon his family, relatives, friends, collaborators and thalassemics all over the world, when his son died some years ago : the ending of George’s life at 27 years of age, was an unexpected blow to all of us. All flowers of May 8 were picked up to cover the tomb of this young man, gifted with an exceptional personality, full of energy and creativity. He proved himself in no time a valuable member not only in his business but also in Cyprus’ society. « Full of concern and interest for the Thalassaemics, as said Doctor Androulla Eleftheriou, Ph.D., Scientific Director of TIF, he stood by his father’s side, hand by hand, during all struggles against Thalassaemia ».
I am an Associate Member of Thalassaemia International Federation and Consultant of the Chronic Diseases Foundation in Geneva. I read too much about the experience with the the bone marrow Transplantation of the honorable Professor Guido Lucarelli, in Italy, who is known in the entire world. This example is very appreciated by me, also by the other Thalassaemic patients not only in Switzerland, but also in France, in Albania, in Greece, in Italy, in Cyprus, in USA, in Great Britain, in Singapore and so on. Prof. Lucarelli was in Albania and the cooperation with the medical staff of this country is in the good road.
As I published more than 10 books, and in the three of them, I spoke also about Thalassemia, the struggle of TIF, CAF, of the professor Guido Lucarelli, of the Albanian doctor’s and the doctors in all the world, it will be a pleasure for me to mention you in some pages of my new book "Hope for the near future" about this useful book. Prof. Photis Beris a very good Haematologue, in Geneva, prof. Jean-Philippe Assal, a professor in medicine and member of the Committee of the the International Red Cross and Dr. Daniel Vasella, General Director of Novartis, Alan Cohen, MD de Philadelphia. Prof. A. Kalangos, the President of the Swiss Foundation “Coeur pour tous” ( Heart for all) sent to Albanian thalassemics patients 15 TV and 15 DVD and she is thinking to help more and more Albania in this field; Prof. Antonio Piga, Prof. Robert Girot, Dr. Marinette Wyss, Prof. Demetriades, Prof. Selaudin Bekteshi, Prof. Enis Boletini, Prof. Anila Godo, As. Prof. Eleni Nastasi etc., helped me to much those three years. I express my deepest gratitude to them. In all my life, in the Struggle against Thalassemia, I will remember my meetings with Dr. Gazetta and the staff of CAF, the National Executive Director of Cooley’s Anemia Foundation Ms Gina Cioffi, in their office in New York, since 1984 and some others years ( at last 2006). I have in my Library the book "Fifth Cooley’s Anemia Symposium" dedicated to the memory of Anthony J. Renda, Jr, and some others publications of CAF. I want to have more from TIF, when I had the pleasure to meet the staff , and they invited me in some of their meetings, because I want to write since now in the newspapers in Switzerland, but also in Albania and in my books only for the struggle of all the patients, the medical staff, the parents, against the illness of Thalassemia. In Albania, the Albanian Children Foundation and her President, Dr. Liri Berisha created one new center of Thalassemia in Lushnja and in other cities. Scientists are working to develop a gene therapy that may offer a cure for thalassemia. Such a treatment might involve inserting a normal beta globin gene (the gene that is abnormal in this disease) into the patient’s stem cells, the immature bone marrow cells that are the precursors of all other cells in the blood. Another form of gene therapy could involve using drugs or other methods to reactivate the patient’s genes that produce fetal hemoglobin - the form of hemoglobin found in fetuses and newborns. Scientists hope that spurring production of fetal hemoglobin will compensate for the patient’s deficiency of adult hemoglobin. Let’s hope all together that God will help us....In the near future I will begin the story... the diary of a simple man, professor of the French Language, international servant, cultural mediator, translator and journalist, about the steps in the treatment of Thalassemia, since 1981. I will you a good reading and please don’t hesitate to write me your critics and your impressions...
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