Cystic fibrosis is a difficult disease because of the emotional and physical damage it causes to both the family and the child. However, it is easier to deal with it thanks to a number of methods.
What is cystic fibrosis, with what symptoms does it show itself? When does it occur? How is cystic fibrosis treated? Learn and be a great supporter to your child.
1. What is cystic fibrosis?
cystic fibrosis; It is an inherited disease that affects the cells that produce mucous membranes, sweat, and digestion. It changes the secretions of some glands in the body. Although these secretions are normally watery and slippery, they are thick and sticky in those with cystic fibrosis.
Instead of lubricating, the secretions block the tubes, ducts, and passageways, especially in the pancreas and lungs. They can also affect the intestines, liver, sinuses, and reproductive organs.
2. What causes cystic fibrosis?
*For a child to have cystic fibrosis, both parents must carry the gene that causes it.
If you want to have children, you and your spouse have the opportunity to get counseling and get tested to find out if you carry the cystic fibrosis gene. You can also have prenatal tests to detect the gene in the fetus.
3. At what age does cystic fibrosis appear?
Cystic fibrosis disease may appear in infancy in some, while in others it may not show any symptoms until adolescence or adulthood. However, the diagnosis is usually made within the first 2 years.
To confirm the diagnosis, the cystic fibrosis sweat test is performed to measure the salt lost by the child. The test may be repeated several times, as the results are not always clearly negative or positive.
The diagnosis of cystic fibrosis can also be made by genetic testing before the baby is born and by ultrasound detection of the abnormality later in pregnancy. Although it is not applied in our country yet, cystic fibrosis screening test is performed on newborns in many states in the USA.
4. What are the symptoms of cystic fibrosis?
Symptoms of cystic fibrosis vary from child to child, depending on the severity of the disease. Symptoms can get better or worse over time, even in the same child. The main ones are;
- The skin is too salty (When you kiss your child, your mouth may taste intensely salty.),
- Recurrent lung or sinus infections
- Absorption disorder in the intestines,
- not gaining weight,
- Foul-smelling and oily stools, especially in newborns,
- Abdominal bloating and intestinal obstruction due to constipation.
5. How is cystic fibrosis treated?
One of the most curious about this disease, “Is there a treatment for cystic fibrosis?” is the question. Although a lot of progress has been made in the treatment of cystic fibrosis, there is no definitive solution to the disease yet. However, it is possible to alleviate the symptoms of the disease and reduce complications with various treatments.
- Cystic fibrosis in children is usually treated with a program that includes medication and therapy. Medication may be given to treat the infection in the body, break up the mucous membrane in the lungs, and reduce inflammation.
- Enzyme supplement pills are used with meals to help the child’s body absorb food.
- In order to soften the mucous membrane in the lungs, it may be necessary to shape the hands into a cup and hit the child’s chest. Usually, this is done for 30 minutes 1-2 times a day. There are also electronic devices that can do this gesture to make the job easier.
6. What is the life expectancy in cystic fibrosis?
In the past, most children with cystic fibrosis died at puberty. Thanks to advances in screening and treatment, those with cystic fibrosis can live into their 50s or even beyond.
7. Which part deals with cystic fibrosis?
- pediatric chest diseases,
- Child health and diseases,
- Internal medicine departments deal with cystic fibrosis.
8. What should cystic fibrosis patients eat?
As in any chronic disease, nutrition is very important in cystic fibrosis. Especially if your child’s growth and development is retarded due to enzyme deficiency, you need to be sensitive to his nutrition. You should ensure that you get the necessary enzyme supplements and vitamin supplements.