Baby from Russia

[Albina]

Hello! My son has cystic fibrosis. He is now 4 years old. We are from Russia. Please tell me how people with cystic fibrosis live? Do you receive treatment and medications, such as Trikafta, etc., in a timely manner? It is very difficult for us to provide medications; everything is achieved through the courts. I really want my son to live a long time.

 

[Ratatosk]

Our son was diagnosed at birth. Prior to drugs like trikafta, we were very proactive in terms of preventing lung issues. We did chest physiotherapy 3 times a day with nebulizer treatments -- bronciodialtors such as albuterol to keep his lungs healthy. He takes digestive enzymes to help him digest fats and proteins as he's pancreatic insufficient. He was on antibiotics to help prevent infections. He's been on trikafta for several years and has now decreased the number of chest treatments he does to once a day unless he's feeling ill, then he increases them to keep his lungs clear.