By: Sylvia Mauzuera - Family Partner, Dallas Childrens
I am Sylvia Mazuera, and I have 2 boys, 20 and 16 years old. My youngest was diagnosed with CF when he was 6 months old. My husband and I are from Colombia, South America, we have lived in Texas for 16 years and we recently lived in North Carolina for 2 years before returning to Texas. We have been involved in 2 CF clinics and are in contact with a group of CF patients in Colombia. We have seen how CF care can differ from one clinic to another.
I am very excited about participating in the CF Learning Network with our center because I know that if different centers share what they do well, then other centers can make changes, and improvement can be achieved. I also know that medical providers are hesitant to make changes that are not backed by research and evidence. The CF Learning Network provides both: the opportunity for centers to share what they are doing and use data to show that those practices generate improvement in patient outcomes.
I also know that medical providers are knowledgeable in their field, but parents and patients are out there juggling the doctor's instructions with daily life. The ideal scenario is not always possible. I think if parents/patients and the medical providers collaborate and work together, the medical and emotional outcomes for the patients are much better. There have been many occasions where I have suggested to the doctor things like "let's sit down and evaluate this long list of medications to see if they still have a purpose and if my son should still take them", because the doctors look at what needs to be added for a specific situation, not frequently at what needs to be eliminated because it is no longer necessary. Something important for the patient, that may not be on the doctor's 'radar'.
It has also been very educational to learn how the medical staff and CF clinic work and function since I have not had any medical training. If parents and patients have a better understanding on how the CF clinic works and the providers better understand what is important for the patients, any ideas and changes implemented will look more like a win-win scenario.