According to a story from the Cystic Fibrosis Foundation’s Community Blog, the internet allows for access to a trove of knowledge and information literally at your fingertips. This has naturally made it an exceptionally valuable resource for rare disease patients. However, it can easily become overwhelming, particularly for diseases that have a significant organized community like cystic fibrosis. There are many sources of info and it can be hard to wade through it all. Mother Erin Taylor, who has two kids with the disorder, gives some tips on what it takes to avoid information overload.
About Cystic Fibrosis
Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the build up of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s with good care. To learn more about cystic fibrosis, click here.
To be clear, this isn’t such a big issue for some rare diseases. In some cases, a disease may be so rare or poorly known that it isn’t very easy to find info about it. However, cystic fibrosis is a rare illness that receives a lot of attention and has more organization and funds going towards it.
Tip 1: Don’t get sucked into Google. While this is often the first place most people start when they want to learn about something, there is little guarantee that you are reading the most updated or accurate info. Nonprofit organizations like the Cystic Fibrosis Foundation are more trustworthy sources that can tell you most of what you want to know.
Tip 2: Have open conversations with your doctor. If you are seeing a specialist that is experienced with cystic fibrosis (which is ideal), they can help answer your questions. It can be a good idea to ask for feedback about info that you hear from other places.
Tip 3: Message boards can be useful, but don’t spend all your time on them. These board, as well as patient Facebook groups, can have good info, but not always. It is also a good way to hear directly from other patients about their experiences.
Tip 4: Not everyone with cystic fibrosis presents the same way. What works for one patient may not help at all for another. Take all of the feedback that comes your way with a grain of salt.
Tip 5: Find a few other cystic fibrosis familes/patients that you feel comfortable discussing care and other decisions with, either online or otherwise. Getting to know other patients is important and they can provide valuable feedback as well as other resources.