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Cystic Fibrosis in India

Up until recently, Cystic Fibrosis was considered to be non-existent in Indian subcontinent. This is why studies were made on Indians living in America to come up with the proper statistics (between 1:10,000 and 1:40,000)

Cystic Fibrosis disrupts the functioning of the cells which make up the sweat glands in our skin (called epithelial cells) by making them produce a defective protein by the name of Cystic Fibrosis Transmembrane Conductance Regulator (CFTCR). This acts as an obstruction to the passage of chloride across various cell membranes, leading to disruption of the body’s balance of water and salt. This in turn affects the mucus which lines the pancreas, lungs and other passageways by making it sticky and thick, thus making it hard to move.

Under normal circumstances, the mucus which is responsible for trapping germs clears out via lungs, but for those suffering from Cystic Fibrosis, the germs remain stuck to the sticky mucus, thus infecting the lungs. In the pancreas, the mucus normally allows passage of enzymes to the intestines, which is blocked when its consistency becomes thicker. The body is then unable to absorb proper nutrients, including fats, which results in children suffering from Cystic Fibrosis being unable to gain weight.

Cystic Fibrosis in Indian children is usually diagnosed late, which is when it is in an advanced stage.

These children show signs of malnourishment and a deficiency of fat soluble vitamins. Due to reduced lung function, they also find it difficult to breathe normally. Thus, any person suffering from Cystic Fibrosis will eventually have difficulty breathing, even when lying down and resting. Sadly, almost all children with this disease show diseases in their lungs as well, which might result in disability and sometimes even a short life span. Caucasians have shown to have the highest risk of Fibrosis via genetic inheritance, with Asians having the lowest risk.

Today, parents can learn during pregnancy whether or not their child has Cystic Fibrosis.

Genetic testing can not only be done during pregnancy, but also after birth. It can be performed on expectant parents so that they can know in advance what they are dealing with. However, no amount of tests can determine whether the child will suffer from mild forms of the disease, or severe ones.

Depending on the severity of the disease, a child may or may not have to be hospitalized to be taken care of by professionals. In case they are, there are numerous diagnostic tests they have to be a part of, along with a nutritional assessment. With every child, the doctors ensure that their lungs are free of infection and remain so. They also suggest a diet with high amounts of vitamin and digestive enzymes that will help them in the process of gaining weight naturally.

After they have been discharged from the hospital, they will be asked to make regular appointments with their doctors, with a varying time period of 1-3 months. But parents should be prepared for one thing – even if their child’s lungs are cleared of infection, they can catch infection again, and very easily. This is why they have to be continuously on antibiotics which will kill infectious bacteria.

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