I’m 25 years old, and I’ve had cystic fibrosis my whole life. My school life, holidays, leaving school and going to institute, my first love and my hobbies were shadowed by inhalations, handfuls of pills and intravenous therapy. An ordinary life, but with the complications caused by my disease and, frankly speaking, by the state. There are the same standards of treating cystic fibrosis in all the civilized countries. No medicine can completely cure me, only maintenance therapy is prescribed by the doctor, and it should be provided by the state. That is the main problem: there is usually no money in the budget for my treatment.
Recently our village was absorbed into New Moscow, and much more medicines have been provided since then. It’s ifficult to put into words how different it feels when you have the pills and when you don’t. Now I look forward with great
optimism and hope, I even try to work, although I often have to take sick leave. Also I still have a weight problem.
Being 25 years old, I weigh mere 30 kilograms. It is another manifestation of my disease: cystic fibrosis impairs the functions of the body systems, food is poorly digested, and to get enough energy I need to eat three times as much as a grown man. The solution to that is special nutrition: a little cocktail contains the same amount of calories as a huge piece of meat. Last year I got that nutrition with your help and put on 5 whole kilos. It gave me so much strength! But the nutrition ran out, and I immediately started to lose weight. Doctors recommend me to take 2 packs of the nutrition a day, which would cost more than 1,000 roubles. My family consists of me and my parents, we aren’t rich and live off my mother’s small salary and my pension. My father was sacked due to staff reduction and is currently looking for a job, but
with no success. Gaining weight isn’t a matter of beauty for me, I’m not ashamed of my leanness. For those who suffer from cystic fibrosis normal weight means more strength, more energy and less exacerbations — it’s a different life quality.