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International Day of Cystic Fibrosis – Listen to Us and Learn About Us!

September 8, 2016, 12:59 2720 Author: Olga Vovk, translated by Andrei Vernon www.deti.zp.ua The main goal of this day is to spread the word and teach people about cystic fibrosis. On this day we want people to learn how we can improve the lives of those afflicted with the disease.

The International Day of Cystic Fibrosis is not a day of enjoyment and relaxation, but rather a “working day.” Certain days throughout the year have been designated as holidays to educate the public. People with various diseases are all united by a common misfortune and on one day a year they can join forces and let their individual voices be heard as one powerful voice.

The main goal of this day is to spread the word and teach people about cystic fibrosis. On this day we want people to learn how we can improve the lives of those afflicted with the disease. Many current and potential parents do not know about cystic fibrosis (“CF”)and would not even have the suspicion that their child might have the disease. The earlier a child is diagnosed, the longer and healthier life they can enjoy.

Moral Support - One thing many people forget about is the moral support parents need when they find out their child has CF. To know about the diagnosis is one thing, but to live with it is much more difficult than most people can imagine. Often family members throw up their hands from fear and hopelessness. Unfortunately, this only makes the situation worse. It is important to not get upset with them and understand that they are afraid of the unknown.

Financial Assistance – Life with CF is extremely expensive. A middle-class family cannot afford the treatments their child requires. On the upper end CF can cost a family 40,000 UAH (~1,400 EUR) a month just for the medicines. Additionally, a family must pay for four trips to the hospital for treatment at a cost of 25,000 UAH (~875 EUR).

Outreach – Sometimes we just want to tell everyone that children with CF are full-fledged members of society and are normal children! Children with CF are constantly coughing – it is neither contagious nor dangerous to others. They are just as smart as the other children, if not smarter. While nature has taken away their health, they have been given other talents. There are many musicians, artists, mathematicians and athletes with CF. These children live life to the fullest and try to learn about many different spheres as possible.

Cystic Fibrosis–refers to an orphan or a rare hereditary disease. It causes the body to attack itself. All bodily secretions become viscous and dense. As a result, the body’s respiratory system, pancreas, liver and intestine are affected. CF is especially difficult on the lungs and if the alveoli become clogged the person will have difficulty breathing and die of acute respiratory failure.

We would appreciate it if you could on this day support our flash mob for children with cystic fibrosis. More information about the flash mob can be found here.

As always – we appreciate the financial support from all of our donors. Without your help these children would not be able to live and breathe on their own!

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Severe bronchopulmonary dysplasia. II degree respiratory failure

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