Disponible en / Available in:
Español
Knowing Cystic Fibrosis helps us to find people who has this condition but has not been diagnosed yet. Dani Río, 13 years old youngster with Cystic Fibrosis, explicains it to you in a very special way with this video.
Here you have the answers to the 10 most frequent questions:
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. Currently, more than 2000 mutations are known in the gene that is defective in people with Cystic Fibrosis, although only about 350 mutations are described as causing the disease.
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
Whics 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
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
How can it be diagnosed?
- Observation of several of the above symptoms
- Checking through a “sweat test”
- Genetic testing
- CF is diagnosed with the neonatal heel-prick test, through infertility or because of frequent respiratory infections,
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 with drugs, 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.
Who can it affect?
Statistics show that 1 in 5,000 people in Spain has Cystic Fibrosis (1 in 6,400 in the Balearic Islands) and 1 in 35 people is a carrier of a gene that causes the disease (1 in 40 in the Balearic Islands).
In the Balearic Islands there are 80 known diagnosed cases, but statistics speak of between 85 and 90 possible cases.
This lack of diagnostics should be corrected by an intense task of divulgation of the disease, as the one that the Respiralia Foundation and the Cystic Fibrosis Balearic Association do.
What is the treatment of Cystic Fibrosis?
The three pillars of the treatment for CF are antibiotic therapy (orally, inhaled and intravenously), a good nutrition and chest therapy combined with endurance training. Also, having regular treatment is very important, applying the aerosols, making chest therapy sessions and taking pancreatic enzymes every day. Monitored sports activities also play a decisive role in the quality of life of the person with CF. You can see all our programas here.
Can a person with CF live a normal life?
Yes, although people with CF may show limitations related with a lower endurance 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. In any case, these people must know their limits and have a rest to continue once they have recovered. From the Respiralia Foundation and the CF Balearic Association we claim that CF is not an impediment in order that these people can realize the same out-of-school and out-of-work activities than their friends, so we offer the welfare services that they need adapted to their schedules.
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.
You can see a summary in this graphic edited by the Cystic Fibrosis Spanish Federation.
