Fundación Respiralia contra la Fibrosis Quística

Here you have the answers to the 10 most frequent questions:

1. What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a genetic disease that affects all the body’s organs that produce secretions. These secretions are very thick and stick to the walls of the organs and impede functions as important as breathing, digestion and reproduction. Today there are more than 1000 known mutations of the gene that cause cystic fibrosis, which accentuates the problem of diagnosis as they present different symptoms that can be confused with other diseases
 

2. Is it a contagious disease?
No, CF is not a contagious disease; therefore there isn’t any risk that a healthy person gets the illness by physical contact with a person with CF.

3. Which are the symptoms in newborn children?
The symptoms related below must make contemplate the possibility that a newborn baby may have CF:

• Delay in the expulsion of the meconium (the first excreta)

• Intestinal obstruction or meconial ileus

• Slow recovery of the weight of birth in the first days of life

4. Which are the symptoms in children?

• Curve of weight below the normal one. The child eats, but he does not gain weight

• Frequent abdominal pain

• Particularly odorous, abundant and oily excreta

• Dry, repetitive and exhausting cough, consequence of colds and respiratory infections

• Very salty sweat and in a great quantity

• Adults can present sterility

5. How can it be diagnosed?

• Observation of several of the above symptoms

• Checking through a “sweat test”

• Genetic testing

• In certain Spanish States, the Balearic Islands included, CF is diagnosed with the neonatal heel-prick test

6. Does it have any cure?
At present CF does not have any cure. Great advances are being achieved so scientifics may find, in a future, the correction of the genetic defect of some mutations. Nevertheless, thanks to the advances achieved with antibiotics in the treatment of the infection, the improvement of nutrition with enzymes and the optimization of the chest therapy, CF has moved from being an infantile disease, to be an adult disease.

7. Who can it affect?
According to different studies, 1 out of every 35-40 persons is a carrier of the mutated gene, which means that he/she does not have the disease. It is necessary the union of two carriers to engender a son with CF. Depending on this data, 1 out of every 6.200 newborn babies should suffer from CF, which means that in the Balearic Islands the figure should be between 150 and 200 people with CF. Since just 63 cases are diagnosed, we can conclude that many people with CF have not been identified. This lack of diagnostics should be corrected by an intense task of divulgation of the disease.

8. What is the treatment?
The three pillars of the treatment for CF are antibiotic therapy (orally and intravenously), a good nutrition and chest therapy combined with sport. Also, having regular treatment is very important, applying the aerosols, making chest therapy sessions and taking pancreatic enzymes every day. Monitored sports activities and swimming also play a decisive role in the quality of life of the person with CF.

9. Can a person with CF live a normal life?
Yes, although people with CF may show limitations related with a lower tolerance to the effort due to the illness. The extension of the pulmonary disease uses to be the one that more affects in their quality of life, limiting the accomplishment of intense or long efforts or the tolerance to environments slightly clean or loaded with smoke. In any case, these persons must know their limits and to have a rest to continue once they  have recovered. From the Respiralia Foundation and from CF Balearic Association we claim that CF is not an impediment in order that the children can realize the same out-of-school activities than their friends, so we offer the welfare services that they need adapted to their schedules.

10. Does a person with CF need my help?
It is only necessary that you understand what having CF means to this person. As soon as you know his limitations, simply respect them and do not ask him to make efforts over and above his possibilities that might be normal for a healthy person.