Spotlight on cystic fibrosis |20 May 2021
May is International Cystic Fibrosis Awareness month, a time to raise awareness about this devastating disease and the progress that has been made in the discovery of its treatment.
Many people do not know of this serious health condition that is increasingly becoming common in Seychelles.
Cystic fibrosis (CF) is a hereditary disease that affects the lungs, digestive system and other organs in the body. It affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery but people with CF have a defective gene that causes the secretions to become sticky and thick.
Instead of acting as lubricants, the secretions plug up tubes, ducts and passages especially in the lungs and pancreas which prevents the release of enzymes that help the body absorb key nutrients in food resulting in malnutrition and poor growth. CF also causes serious lung infections like pneumonia, liver disease and infertility in men.
People with cysticfibrosis need a balanced diet, although many will require more energy (calories) than people without the condition in order to maintain a healthy body weight, which can be challenging. Nutritional needs will vary according to age, weight, height, symptoms, lung function and activity level.
Many people do not know that they are a carrier of the CF gene because they only have one copy of the CF gene; a person with CF inherits one mutated copy of the gene from each parent.
There is no treatment for Cystic Fibrosis, only for the complications it causes to the body. But although the disease is progressive and requires daily care, people with CF are usually able to maintain an ordinary daily schedule, attending school or work.
Over the decades, quality of life for people with CF has improved greatly due to advancements made in screening and treatment methods. Now many can live up to their mid-thirties and forties, although some are still losing their lives.
Our hearts go out to all those who are being affected in one way or another by Cystic Fibrosis.
Compiled by Iza Amade
Encadre:
Tips for coping while taking care of people with cystic fibrosis
- Stay organised: Respond to bills, medication instructions and insurance forms as soon as they arrive to avoid a backlog.
- Inform yourself: Find out as much as you can about CF to avoid feeling overwhelmed.
- Maintain your social life: Make time to see friends and family to avoid feeling isolated and alone.
- Maintain a healthy lifestyle: Eat well and exercise regularly and make sure you get 30 minutes of fresh air every day.
- Sleep! Maintain a good sleep routine. Make sure you try to go to bed and wake up at the same time every day. Don’t stay in bed when you are no longer asleep.