Personal Interest

LET ROTARY SHOW THE WAY

by Sayantan Gupta
Saturday, November 19, 2005. 08:25PM
909 Views 1 Comment

Diseases are essentially of two types, acquired and congenital. Poliomyelitis is an example of an acquired disease brought on by the Polio virus, which Rotary has helped to all but wipe out from the face of the earth. Thalassaemia is the example of the other, ie. the congenital type. It is a disorder of the blood carried down through generations via carrier parents, leading to untold misery for the suffering children and immense agony for the helpless parents. But every armour has its chink, every chain its weak-link. This has to be exploited. In the case of Polio, the weak link was the fact that the virus cannot survive for long outside its human host and there no intermediate vectors of the disease. In the case of Thalassaemia the disease is fully expressed only in children born of both parents carrying the thalassaemia trait. Then too there is a four-in-one chance of a child being born with the full blown disease requiring repeated blood transfusions merely to survive. Thus it can definitely be prevented and Rotary can do ia. I'll tell you how. It all depends upon a committed drive to ensure Awareness and to motivate Screening. If secondary school children are maed aware of the disease and are motivated to undergo the screening test, then the job is half done. They must be made to realize that pre-marital screening is very important. The idea that one with a trait must never marry another with the same trait has to be ingrained in the minds of these youngsters. It must also be emphasized that a healthy individual marrying one withthe trait runs no risk whatsoever.If pre-marital screening and appropriate action becomes the general practice then thalassaemia will also go the same way as small pox. Rotarians are a great force to reckon with. We have the Human Resources and the infrastructure. We have huge armies of Volunteers, Interactors and Rotaractors who can take up our battle on our behalf. If we are motivated enough to launch Awareness and fecilitate Screening world-wide, then, maybe, we shall live to see a thalassaemia-free world. As with polio, let Rotary show the way with thalassaemia too. Let us make our future generations safe and secure.

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Sunday, November 20, 2005. 09:54PM by Geof Lambert
One of the world's leading authority centers on this disease is headquartered here in Northern California in Oakland, California, which is the home city of Rotary Club #3, the Rotary Club of Oakland. The center is in the Children's Hospital of Oakland. You can read more about it at this website: http://www.thalassemia.com/index.htm... is from that site: Thalassemia is the most common, inherited single gene disorder in the world. Early comprehensive treatment has changed thalassemia from a fatal pediatric disease to one in which patients live productive lives throughout adulthood. Advances in treatment are exciting, resulting in the potential for cure and improved quality of life. However, many patients never receive the information needed to make educated decisions about treatment. Many ethnic groups are unaware of their genetic risk of thalassemia and do not receive genetic counseling or pre-natal diagnosis. Others have heard of pre-implantation genetic diagnosis as a technique to achieve a healthy newborn, but do not have access to objective medical information of its risks and benefits. Thousands of patients receive medical care outside of specialized thalassemia centers. These patients and providers need information concerning recommendations for comprehensive screening tests, access to new research protocols and treatment including transfusion therapy, new chelation therapy, stem-cell transplantation, hormone replacement, heart disease, osteoporosis and hepatitis. Quality of life for families and patients can be excellent with a future including employment, marriage and children. To achieve this, families and providers need information concerning psychological wellness, cultural issues and counseling for family planning and marriage. In summary, this site should provide the family and providers with necessary information to make informed decisions and achieve optimal quality of life. It is our hope that by providing electronic education about the disea