We started with the work of the association with the aim of uniting with each other in the fight for better care, realization (not yet approved) orthopedic aids, medicines, food supplements, etc.
We exchange experiences by socializing. Thus, we become aware of why the so-called name "disease with 100 faces" is justified.
Each of us experiences cystic fibrosis in his own unique way, and we believe that this is the reason why it is important to constantly educate ourselves, and thus bring closer to society the problems and severity of cystic fibrosis.
The Croatian Cystic Fibrosis Association of the patients is a non-governmental and non-profit organization founded to support patients, families, friends, doctors and other situations in everyday life with cystic fibrosis.
We exchange experiences by socializing. Thus, we become aware of why the so-called name "disease with 100 faces" is justified.
Each of us experiences cystic fibrosis in his own unique way, and we believe that this is the reason why it is important to constantly educate ourselves, and thus bring closer to society the problems and severity of cystic fibrosis.
The Croatian Cystic Fibrosis Association of the patients is a non-governmental and non-profit organization founded to support patients, families, friends, doctors and other situations in everyday life with cystic fibrosis.
Donations
Since we are a non-profit and non-governmental organization, we are funded exclusively by donations received. If you want to help the work of the association, please consider a donation so that you can continue working.
Bank Account
Croatian Cystic Fibrosis Association
HR88 2340 0091 1109 35183
PRIVREDNA BANKA ZAGREB,d.d.,10 000 ZAGREB
PayPal
Goals and activities
Goal
Promotion, development and improvement of all forms of care (medical, social, legal, etc.) and quality of life and activities of persons suffering from cystic fibrosis; Ensure the active and equal participation and inclusion of people with cystic fibrosis in the daily life of the community; Ensure equal opportunities for people with cystic fibrosis by advocating for their rights, sensitizing the public, advocating, educating and informing, and providing appropriate services to its members.
Activities
About Cystic Fibrosis
Opće informacije o Cističnoj fibrozi
General Informations
Cystic fibrosis is a rare genetic, incurable and progressive disease that significantly affects quality of life and its duration. The disease affects many internal organs, most notably the respiratory system (lungs, bronchi, sinuses), the digestive system (intestines, pancreas) and the reproductive system. Frequent pneumonia is present, as well as indigestion, infertility and other problems. The diagnosis of the disease is made in the first 3 years. of the child’s life, although there is a possibility of later diagnosis, which suggests a somewhat easier course of the disease. As you grow older, the risk of secondary diseases increases due to the impact of CF on many internal organs (liver, bone, pancreas diseases). CF is an invisible disease to the eye because its battles with frequent infections and internal disturbances are not visible.
Symptoms
- unexplained frequent or chronic colds
- heavy breathing
- chronic or frequent pneumonia non-progression,
- poorer growth abundant,
- frequent stools that have a specific odor and contain oil droplets (indigestion) frequent,
- chronic diarrhea dehydration due to strenuous physical exertion,
- diarrhea and in times of warm weather saltier sweat than in healthy individuals unexplained liver disease positive family history,
- ie infant deaths,
- other children in the household with similar symptoms,
- or an already established diagnosis of CF
Treatment
In the treatment of the disease itself, daily treatment with pharmacological measures is important with a tendency to aggravate them with worsening of the underlying disease (lipases for fat breakdown, hypertonic solution by inhalation to maintain lung moisture, antibiotics - intravenous, inhalation, and in the form of syrups / tablets at the time of infection, maintenance lungs with inhalation preparation Pulmozyme (a), various supplements (vitamins, minerals), dietary measures (increased caloric intake under the supervision of a nutritionist by determining caloric intake by an individual approach) with additional high-calorie preparations, and physical therapy necessary (manual and autogenic drainage, various aids in the adoption of respiratory resistors - additional education of the parents themselves during the beginnings of physical therapy, which increases over time).
Basic goals of therapy
The main goals of therapy could be to slow down lung damage (respiratory, physical therapy and antibiotics) and increased caloric intake during the diet with high-calorie preparations, healthy food, exercise, medication to influence the growth and development in the care of patients with cystic fibrosis. present a multidisciplinary approach (multiple medical teams) that complement each other with regard to the course and severity of the disease. The teams consist of a pulmonologist, gastroenterologist, otorhinolaryngologist, cardiologist, nutritionist, radiologist, geneticist, physiotherapist, honey. sisters, and the longest and permanently parents and family of the sick. That is why it is also a disease of the whole family and not just the sick. Gradually, with their growth and maturation, patients are educated about personal care and therapies, individually and depending on the condition. Hospital treatments, which, in accordance with frequent illnesses, can be long-lasting, which also leads to significant financial costs. So, for the life of the sick, it is extremely important to raise awareness of the environment and modern society about the disease itself in order to facilitate (co) life with the sick in various ways.
Sponzori
