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[Back to edition-3] | MAILBAG ARABIAN THANKS Dear Editor I was so delighted to read the nice article written by Mrs Karleen De Rijcke about their visit to The United Arab Emirates a year ago. They were wonderful guests, and were more than friends, creating a beautiful atmosphere of friendship, love and hope among all the local people whom they were able to meet. As a result of that successful visit many local people in Abu Dhabi are very enthusiastic to welcome such guests every year if and when possible. We hope that this will enable us to share our nice, warm weather with many other patients with CF from different countries where it is colder during winter time. I would like to thank you very much for showing interest in that visit by allowing thousands of people to read about it, and to also thank the people who organized and supported the project. Dr Abdurrab H. Saleh
PENPALS WELCOME Dear Editor For the past 15 years I've been a supporter of the CF community. I am 25 now, but I first read the book ‘Alex’ by Frank Deford at the age of 11 and Alex Deford's story inspired me to get involved. I understand what it is like to have an illness as I have a form of anemia. I enjoy making new friends so I invite other readers of this newsletter to write to me. Thank you and God bless you. Colleen Rue
INSPIRATION FROM COSTA RICA Dear Editor My name is Miguel Ángel Meléndez Solano and I am the father of a seven-year-old girl with cystic fibrosis. Believe me, the struggle here in this country is hard since we do not have state support, nor from the people in general, only from the families affected by this ailment. However, we always manage to keep things going. In Costa Rica, the disease is practically unknown, although
we already have more than 13 years diagnosing I currently work as general secretary of the new Asociación
Costarricense de Fibrosis Quística (Cystic Last year I carried out a large-scale qualification workshop
for families with this ailment, which made my The presentation of your web site is excellent and I will be in contact in order to see your articles which are of great value to us, since although we are just beginning research in this field, they help us as an incentive to keep us from getting discouraged.
PROGRAMMED TRANSITION IN ARGENTINA The imperative necessity of a programmed transition of our patients with cystic fibrosis towards adults' hospitals began when these young people became adolescents. Fifteen years ago, cystic fibrosis was not known in Mendoza, Argentina. It seemed to be non-existent, when in fact it was not detected. Faults in the sweat test and many other factors conspired negatively against these patients. In the natural evolution process of our pediatrics medicine, many of us in the children’s hospital began to develop sub-specialties. When the planning of the pulmonology department began, in this natural evolution of medicine in Mendoza, the necessity of studying and understanding this pathology arose as a priority. Mendoza is located on the feet of the mountain range “Cordillera de los Andes”, in the west of Argentina. Our current population in Mendoza is 1,500,000 inhabitants. There must have been cystic fibrosis patients since the majority of our population are descendants of Europeans. Creating the Pulmonology department and the CF Care Center was a long process during which I had the benefit of a scholarship from the Cystic Fibrosis Foundation (Dr. Beal) to learn in an organized center in USA (St. Christopher´s Hospital. Dr. D.V. Schidlow), everything that was necessary to begin this work. When I came back many people collaborated in this enterprise (otherwise it would have been impossible). The difficulties were enormous! Sometimes I thought they were too many! It would be sufficient to comprehend that we had to send personnel to correctly learn the sweat test in our Capital (Buenos Aires), where treatment of the disease was already more organized. We had to develop techniques to place catheters, convince our colleagues that doses of antibiotics for cystic fibrosis patients had to be greater than those that were used, convince our directors to buy imported digestive enzymes (the national ones did not seem to be useful)…, and so on until we succeded in making all the hospital personnel, including surgeons, nutritionists, psychologists, gastroenterologists, social workers and physiotherapists, understand and get involved in the care of these patients. Easier to say than to do! When our patients began to arrive at the age of sixteen, we began to have disadvantages with our hospital management. Our hospital usually treats children and young people up to 15 years old. We succeded in the first step to change these concepts when we obtained allowance to treat this pathology until the age of eighteen years. ¡There were no adults’ hospitals with the same organization and experience of ours after 10 years in the subject matter! I insisted vehemently at that time on planning the transition otherwise and not to produce it abruptly to avoid that so many years of work were lost and the patients went backwards in their disease. We invited colleagues from adults’ hospitals to train themselves in ours. There was no interest. Nothing seemed to go well! The derived patients only seemed to complicate the organization of those adults’ hospitals, and we had serious problems with the entrance, catheters, antibiotics’ doses, systems of purchases, etc. Time seemed to go back at that moment. This drama developed before our eyes whenever we wanted to treat a patient and we derived him to another hospital for intravenous treatment. It is important to clarify that ours is the only hospital that has a program of CF domiciliary care. That is why they had to be hospitalized in adults' hospitals in order to be treated, since they do not provide this service. Our hospital is the only pediatric hospital in the province covering complex medical needs. A year ago a law that takes into account funding and protection for these groups was promulgated. A provincial congressman, who is also a doctor, knowing the problem due to his experience in transplants, impelled and obtained this law. I was consulted on the matter, and luckily it was approved in 2003: it provides funding for cystic fibrosis patients older than 18 years old, from our provincial lottery. I am in charge of this program and we already began buying medications that should have been bought by adults' hospitals…, but they did not do it. After long discussions with our directors the system works this way: our pulmonology department is in charge of all the external consultations without age limits. Of course we needed advice in subjects that we were not customary to treat. When we need to administer intravenous treatments, these are managed by the program of domiciliary care of our hospital and the antibiotics are administered in the house of the patient. They come to the hospital once a week to be evaluated by us. Evidently, if there were necessity of intensive therapy or surgical techniques, these procedures should be done in adults’ hospitals. Some procedures are done in our hospital: for instance the sputum culture, since we are the only ones who detect Burkholderia Cepacia (thanks to our advirsor, Dr J. Lipuma). This is a new and slow process and we are in the initial stage to convince all our administrative, nursing and medical personnel, so that they accept this new system. It is not easy. We also know that as the number of cystic fibrosis patients becomes more important, it will be necessary to develop a different transition system, but as an intermediate organization towards this aim we think that this one will be far better for the happiness of those who underwent a non-planned transition program. This model can be criticized from the point of view that we are delaying the entrance of these young people to the world of the adult. We had to learn how to advise on natality control, sexuality and other topics (i.e. drug addiction). ¡Up to now everyone is much happier! Dr. Eduardo R. Lentini
INTERNATIONAL CF REGISTRY? Dear Editor I am 45 and recently diagnosed with CF. I have one deltaF508
mutation and one Q996Q mutation, which is also known as 3120 A to G. I
am interested in information about the 2nd mutation or the combination
of the 2. I am also searching for a registry of CF patients that might
detail ages, mutations, treatments being used, etc.
Editor’s Note: If you have the same genetic mutations as Lenore contact her direct: mrslenore@juno.com. Alternatively if you have information of a CF registry holding such information, please contact me: editor@cfww.org.
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