May is Cystic Fibrosis Awareness Month

As is well known, cystic fibrosis is a congenital metabolic disease that can be treated but not cured. This means that only the symptoms are treated – lungs filled with mucus, pancreatic insufficiency, malnutrition, malabsorption, infections and so on. Cystic fibrosis is a chronic disease that a child will have throughout their life. It requires the right treatment so that the child can survive and live a life as close to normal as possible.

Cystic fibrosis (CF) is a genetic disease that affects both boys and girls. Children are born with CF, and this does not change throughout their lives. This means that CF is not caught like a contagious illness and does not pass from one child to another. Because the child is born with CF, it is known as a congenital or inherited disease. Cystic fibrosis occurs in children who have inherited one cystic fibrosis gene from each parent. People who carry one copy of the CF gene are called CF carriers and are completely healthy.

Weighed down with medicines, we often ask ourselves whether our children really need all of them. The answer is YES! None of them can be skipped, and the treatment is expensive! Daily therapy must never be neglected. It includes inhalations, physiotherapy, enzymes with every meal, antibiotics when needed, fat-soluble vitamins, liver medication and regular clinical tests. Sometimes a hospital stay is needed for check-ups or specific therapies.

Treating cystic fibrosis is not easy, but all parents learn how to care for their children. It may be hard at the beginning of treatment, but as it is learned and practiced, it becomes routine. Treatment will be needed throughout the life of a person with CF.

If a child is doing well, it is because of the treatment and care they receive. Physiotherapy and enzymes must never be interrupted, even when the child seems to be in good health. A doctor should be consulted whenever the child seems weak or unwell, especially if they look physically poorly. If the treatment is being followed properly, the child should be checked for a new lung infection, or other causes should be investigated. Additional treatment may require a hospital stay to receive intravenous antibiotics. If the child is too weak to do physiotherapy or to take their enzymes, they must urgently stay in hospital.

When we consider the price of antibiotics and hospital stays, CF treatment is expensive. In some European countries, treatment is covered by the health services. In Kosovo, all treatment costs must be covered by patients themselves – costs that exceed €1,000 a month. As a result, it is often beyond the means of families in Kosovo to provide their child with medication and treatment on time and in the right way, which is essential for our children to survive.

The Association for Persons with Cystic Fibrosis in Kosovo was founded in 2015 and currently has around 115 members, all of them parents of children with cystic fibrosis. According to the Association's data, around 115 children in Kosovo are affected by this disease, although the real number is believed to be many times higher.

Having a child with CF is no one's fault. It is painful and hard, but no one is to blame. No one – neither the child nor the family – should feel guilt or shame about it. Feelings of anger and loss often make life harder. Everyone carries some abnormal gene; parents of children with CF are simply unlucky, because it happened that both of them are carriers of the CF gene. When a CF diagnosis is made, it is very important to accept that the child has cystic fibrosis. Nothing in the world can change this fact. The sooner we and our child learn to live with CF, the sooner we will learn to fight it, and the less time we will lose before starting effective treatment. Because CF was discovered relatively recently, many people, including doctors, may know little about it. Very little was known about CF when it was discovered in the 1930s, and at that time there were very few medicines to treat it. Today we know much more about CF and there are more medicines, especially enzymes and antibiotics, which make patients' lives longer and more normal. In some cases, parents blame themselves for their child being ill but are unable to find out why. A child may go through many tests and see many doctors before a CF diagnosis is made. When parents first learn that their child has CF, they know very little about the disease. When doctors explain that the disease is chronic and that there is no cure, they are worried and sometimes even angry. It takes time to accept the truth.

We are aware that the coronavirus (COVID-19) outbreak is causing considerable concern, especially within the cystic fibrosis community. Family members and carers of people with chronic conditions such as cystic fibrosis should take appropriate precautions and extra care to avoid bringing COVID-19 into the home.

May is Cystic Fibrosis Awareness Month. Since we are unable to hold events this month as we did in previous years, we will instead use social media during this time to bring you as much detailed information as possible about cystic fibrosis and its treatment.

Kind regards,

Association for Persons with Cystic Fibrosis in Kosovo.