Advocating for Your Child With CF | My Cayston Community™

lisa greene

CF care has come a long way since my babies were diagnosed with CF nearly 20 years ago. New medications give us hope. However, the long list of medications and treatments take time—something most of us are chronically short of in our busy lives.

Choices need to be made about what medications and treatments are required from a medical standpoint and how we fit them within the day-to-day routines of the family. As a parent, I am in control of these decisions until the early teen years. Then, it seems like overnight, our kids grow up and start making these decisions themselves. And, they will use our example as the model for their own decision-making.

My care team has always been an important and valuable resource for education and information. However, I learned early on that I needed to take charge of educating myself about CF, learning about new therapies, and being proactive about talking with our care team about what might work best for my children. There are many resources for this now, much more so than 20 years ago.

I learned early on that I needed to take charge of educating myself about CF, learning about new therapies, and being proactive about talking with our care team about what might work best for my children.

I started by looking up information online from sources like "Google Scholar." I learned how to read research studies efficiently—starting with the abstract, skimming the background section, and then jumping to the conclusion section at the end. I would bring a copy of the abstract with me to a CF clinic appointment to discuss it with our doctor. My kids would be prescribed new therapies and medical devices because of the research I had done.

Another way I've stayed on top of the research is through the CF Foundation website (www.CFF.org), which provides a wealth of information such as the CF drug development pipeline. I've often asked our CF team about different opportunities for participating in research studies.

I'd also find out what my care team had learned at recent conferences. As my children got older and I could more easily leave them with their dad and grandparents, I started attending CF conferences (as a parent and then a speaker). I love going to CF Education Days, which are offered by many CF clinics, and conferences like NACFC and CFRI. I learn directly about new discoveries in CF, upcoming therapies, and novel medical devices from both researchers and pharmaceutical representatives. I am grateful that I can attend several each year, and I always learn something new. I highly recommend supporting your CF team and local CFF chapter by attending the events that they organize for you.

Learning about CF, including new treatments and care options, takes time and a little effort. In the beginning, I would take the time to do this a couple of times per week instead of watching a movie or surfing the Internet aimlessly during down time. I'd search the Internet with a purpose in mind: to learn something new about CF so that I could be more prepared and empowered to make good decisions for my children and truly partner with our care team.

Also, being involved with the CF community through social networking sites and serving as a member of our clinic's Parent Advisory Council has been very helpful. I am able to connect "live" with other parents and adults with CF and have learned a lot. I always keep in mind that there can be inaccuracies and flat out bad information. I bring my questions to our care team and check things out carefully before working with our doctor to make changes to my children's care plan.

Now that my children are young adults, they are following my example and bring their own questions and ideas to clinic. They are empowered and curious young adults who ask good questions of their providers, are interested in learning about CF, and take responsibility for their care. As a mom, that's the best I can hope for. My job now is to support them in their CF care, be another advisor to them as best I can, and to be their cheerleader as they pursue their dreams.