Cystic Fibrosis Blog
The purpose of this blog to help us learn more about the experience of being a Cystic Fibrosis sufferer or family member of someone with the condition. As the UK’s number one inherited life threatening condition we believe talking with patients will help us prepare for future research projects.
Cystic Fibrosis, also called mucoviscidosis, affects the entire body. Shortness of breath is the most common symptom and results from frequent lung infections such as pneumonia that are treated, though not always cured, by antibiotics and other medications.
We are particularly interested in the following points; however, please feel free to mention anything which you think is important.
- How does Cystic Fibrosis affect your daily life/ the daily life of your child? What is the impact on other family members?
- What are the main challenges in living with Cystic Fibrosis and your treatment regime?
- Tell us about you/your child’s medication and treatment for Cystic Fibrosis?
- Do you receive and collect prescriptions for nebulised antibiotics for yourself/your child? If so how?
- What would you like to see improved in the support provided by healthcare professionals and their teams?
Thank you very much in advance for your help. You are most welcome to check back on the blog at any time to see what others have said and perhaps contribute further thoughts. If you know of another cystic fibrosis blog please let the group know. Or if you know of a cystic fibrosis trust.
I look forward to reading your comments and, of course, thank you very much for your input.
Best wishes
Belinda
