-
“Where to Start for Proper CF Treatment? Need Guidance”
“Need Guidance”
Hello everyone,
I am the parent of a 5-year-old son diagnosed with Cystic Fibrosis (CF). We live in Pakistan, where CF awareness, treatment, and essential medications are extremely limited. Currently, we have started Enzyme Replacement Therapy (Creon) for the past two months, but we haven’t been able to do genetic testing (WES) yet due to unavailability and high costs.
I need guidance from experienced CF patients, caregivers, and medical professionals on the right steps to take for his proper treatment. Specifically, I would like advice on:
1. Medical Approach: Since we are only managing his pancreatic insufficiency right now, what other essential treatments or therapies should we prioritize?
2. International Treatment Options: Given the lack of CF care in Pakistan, what are the best options for seeking treatment abroad, and how do families in similar situations manage this?
3. CF Care Routine: Any important lifestyle changes or therapies (nutrition, physiotherapy, breathing exercises) that we should immediately focus on?
We are trying to give our son the best possible care despite limited resources. Any advice, shared experiences, or guidance would mean the world to us.
Thank you in advance!
-
1 Reply
-
Hi, First I’d like to say, don’t panic! I’m almost 65 years old and was diagnosed when I was 3 years old. The best advice I can say is to keep your child active. Exercise, along with good nutrition is very important. If you can start taking Vitamin D, zinc, selenium, and Vitamin C and E, that may be beneficial. Getting sun, if you can’t get Vitamin D supplements. I don’t know what’s available to you, by way of doctors or medical facilities. A good pediatric pulmonary doctor is a start. All the best to you!
Log in to reply.