As a mom of two kids with cystic fibrosis, there are many reasons why I am thankful to live in 2019. Medical advancements, ongoing research, and groundbreaking medications that positively impact the CF community are at the top of my list; but there are also smaller things I take for granted, like access to information.
Believe it or not, the world did exist without the internet, and just a few decades ago CF patients and parents had to rely on the good word of their doctors or medical journals to find out about CF care options. Today, we have message boards, Facebook groups, online communities, news sites, and quick access to other CF patients and caregivers who feed us information in addition to the advice of our doctors.
It's nice to have these resources at my fingertips, but it can also be overwhelming, especially when information is conflicting. For example, I'll browse a Facebook group and see a picture of kids doing treatments in a slightly different way than my kids' doctors have prescribed; or I'll talk to a CF mom friend and find out her children are on different medications than mine; or I'll read an article about something I didn't even know was possible with CF, and I find myself down the rabbit hole of the World Wide Web. So, how do any of us know where to go for credible information? That's for each of us to decide for ourselves. Here are the tips I follow for managing information overload and navigating the best care for my kids.
- Stay off Google. The first rule of being a CF parent is to stay off Google. Almost nothing good will come from Googling anything CF-related. I know this, but somehow, I still find myself doing it. It usually leads me to find very old or outdated information. With so many other places to go where you can talk to real-life people with information, just say, “No,” to Google. The Cystic Fibrosis Foundation website has great resources on just about anything you may be looking to research about CF care.
- Have open conversations at CF clinic. I feel lucky my children are seen by some of the very best doctors in the country, and I really trust their judgment. I feel comfortable bringing up information I've learned from other sources and having discussions about whether this information may be right for my kids.
In one instance, I mentioned to a doctor I had seen a YouTube video of kids doing their treatments differently than he had prescribed, to which he responded: “You see people jumping off cliffs on YouTube too, don't you?” Point taken. Other times, I've brought up ideas for my kids' care that my care team has supported, like starting my daughter on an inhaler and spacer rather than nebulized albuterol to save time during treatments. Ultimately though, I really do trust their years of experience and use them as my main source for guidance. - Surf message boards in moderation. I personally don't post on message boards or Facebook groups, though I do find myself lurking on them on occasion. Sometimes that information is helpful, but other times it's not. I often find myself taking a break from these resources when I feel overwhelmed and popping back on when I'm in a better mindset to learn. I think these resources are a great way for patients and parents to connect, but you should keep in mind that you will need to sort through differing opinions to find what's right for you.
- Remember, CF is not apples to apples. It's hard to compare my kids' CF to others' when there are more than 1,700 disease-causing mutations, different care centers, distinctive environments, and varying levels of compliance. What may work great for one patient may not for another. I do best when I compare my kids to themselves rather than comparing them to those from other families.
- Find a few go-to friends to discuss care. I have a few other CF moms and friends whom I can always count on to talk about all things cystic fibrosis. I have one friend who sends me high-calorie recipes and great germ-prevention tips; another who has a child a few years older than mine whom I can rely on for some of those “what-to-expect” questions; and another who is the queen of 504 plans. I've found it helpful to have a solid group of other parents I can poll and share information with.
- You do you. Rely on the sources you trust most and use your best judgment in navigating information. Be an advocate for you or your child's health. Speak up, ask questions, and feel in control of medical decisions.
What are your tips for managing CF information overload?
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