By Truneal Rogers The Barbados Advocate
A death sentence. Those are the cards that are dealt when you are diagnosed with Cystic Fibrosis [CF]. Even though some individuals afflicted with the disease live to celebrate their 40th birthday, most die in childhood or barely see their 30s. Around 30 000 Americans of Eastern Europe, German and European descent have CF.
It begins with one abnormal gene. This was in 1989 and with it the fact that CF is hereditary. Coughing, wheezing, poor growth, repeated bouts of pneumonia and serious swelling of the feet and hands are just some of the symptoms that CF victims suffer with.
CF affects the way that sodium chloride [salt] would normally move in and out of vital cells. These include those cells that line the pancreas and the lungs.
The result? Thick, sticky mucus, among other secretions, which causes problems when you breathe. It also gives bacteria a breeding ground, which leads to lung infections that can contribute to an early death. Also, thick digestive fluids clog the ducts which lead from the pancreas to the small intestine. This irrevocably hampers the digestive process, which gives way to stunted or slow growth.
Another sad fact is that 97 per cent of men with the disease are infertile. Although some women can become pregnant and do have a healthy pregnancy, most have trouble conceiving. They are usually in close contact with their obstetricians as they will need continued specialised care.
A blood sample, saliva or sweat is used to ascertain the status of health. Taking into consideration the growing prevalence of CF, many children are diagnosed within the first six months of their life, if they haven’t been tested as a foetus.
Genes come in pairs. A child must have two CF genes. One from the mother and one from the father, both of who must also be “carriers”. A “carrier” is one who carries one normal gene and one abnormal gene. When both parents carry an abnormal CF gene, there is a one-in-four chance that the child will have Cystic Fibrosis. Fifty per cent will be a “carrier” like their parents and a 25 per cent chance that the child will be free of the abnormal gene. Pre-natal tests, however, cannot tell you the severity of the unborn child’s condition.
Since the quantity of life for CF sufferers is unpredictable at best, the doctor’s goal is to provide the best quality of life. Intravenous, inhaled and oral antibiotics are used to aggressively treat and control the infections. Mechanical devices such as a ThAIRapy Vest and mask nebulizer and inhalation medications are employed to alter and clear the thickened mucus from the lungs. In addition, lung transplants and gene therapies aim to cure some
effects.
“Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.” Swiss and German literature from the 1970s told the fate of those with Cystic Fibrosis. Even though counselling is provided for those expecting a baby with CF or those who have been living with the disease for years, we can only take a page from the Cystic Fibrosis Foundation. We must make sure that we are continually “adding tomorrows every day”. What more can one ask for?
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