Today is November 21st International Cystic Fibrosis Day.
Cystic fibrosis is the most common genetic rare disease, which usually occurs in early childhood and affects the lungs and gastrointestinal system. It is characterized by frequent complicating infectionswhich require daily rehabilitation and inhaler maintenance therapy. Often, the cystic fibrosis patient takes more than 30 tablets daily, spends more than 3 hours on his treatment and makes nearly 10 inhalations, recalls the Cystic Fibrosis Association.
The cause of the disease are two defects in the so-called CFTR gene, inherited from both parents. They are currently known over 1600 different mutations, which cause the disease, and statistics show that every 33rd Bulgarian is a carrier of one of them.
There are 253 patients in Bulgaria affected by this most common rare disease, and more than half of them – 63% are children. It reported Anton Alexievchairman of the “Mucoviscidosis” association, quoted by BTA, citing data from Aleksandrovsk Hospital – the medical facility where these patients are diagnosed, treated and followed up.
He pointed out that a donation campaign is also being organized for 50 inhalers for patients with the disease. The association organizes donation drives because the inhalers are specific, almost professional, and provide the necessary strong atomization of the medication, he explained.
According to him, some of the patients are in need of 10 inhalations per day, and the Health Insurance Fund does not provide such inhalers. The amount to be collected is BGN 25,000. One such inhaler has a one-year warranty period. We have set a period of about three years in which a patient can use a given inhaler, because not everyone does 10 inhalations a day, he explained
Donation methods are indicated on the organization’s website. The association insists on conducting neonatal screening of newborn children in order to start timely treatment. Another goal of the patient organization is the provision of food for special medical purposes for patients with cystic fibrosis. Children do not digest normal food well and for this reason they are much weaker than their peers. The foods that are needed are high-calorie and high-protein, Alexiev explained.
Still NHIF does not reimburse food for medical purposes, which is needed for patients with cystic fibrosis. This issue is currently being discussed with the NHIF and we hope to overcome it, he added.
On the occasion of today’s day dedicated to the disease, events are coming up in the big cities of Sofia, Veliko Tarnovo and Plovdiv.
From 2 p.m. to 4 p.m. in front of the National Library “St. St. Cyril and Methodius” in Sofia, an information campaign will be held. At 6 p.m., the Library building will be illuminated in purple – the color designated as a symbol of the disease.
At 6 p.m., the Tsarevets hill in Veliko Tarnovo will also light up in purple. From 2 p.m. to 4 p.m., an information campaign will be held in front of the building of the Municipality of Veliko Tarnovo, as well as a lesson will be held with the students of the 3rd grade of “Emilian Stanev” Secondary School, with the aim of including children with cystic fibrosis in school. Such a lesson will also be held in Plovdiv with the students of the 4A class of the Dimitar Matevski Secondary School.