Gut Health for Cystic Fibrosis

We learned that June Marie, our now 5 month old daughter, has cystic fibrosis when she was just 3-weeks old. This was quite possibly the worst day of my life. I’ve always thought how awful it must be for parents to learn of certain issues with their children, but you never know how awful it really is till you’re wearing those shoes. It’s heartbreaking, absolutely heartbreaking.

Before I get into the battle, let me first introduce the disease. June has a genetic defect (don’t worry, she’s not contagious) in which the proteins that regulate salt movement in and out of her cells don’t function properly resulting in especially thick and sticky mucus throughout her organs. This is problematic for a number of body systems, but the two most severely affected are the digestive and respiratory systems. In the digestive system, digestive enzymes produced in the pancreas become trapped in the sticky mucus and people with cystic fibrosis will essentially starve to death while digesting their own pancreas in the meantime. Sounds lovely, huh? In the lungs, infections that are relatively benign for most people can become lodged in the sticky mess, resulting in prolonged and intense respiratory infections. Repeated infections result in the build up of scar tissue and nasty biofilms, which drastically reduces lung function, and ultimately leads to death from lung disease.A quick Google search of cystic fibrosis reveals that the life expectancy of someone with cystic fibrosis is 20-30 yrs. And we’re not talking about vigorous, thriving years. We’re talking about 20-30 yrs spent battling illness. Not exactly what you want to hear when your baby is 3-weeks old. I felt like we were being told that we were going to watch our baby June slowly die over the next few decades. Like I said… worst day of my life.

As awful as all of this sounds, we have been reassured that the outlook is much different nowadays and we can expect great things for June’s generation of CFers. The Cystic Fibrosis Foundation is spearheading research that has resulted in the discovery of phenomenal drug therapies in the past 2 years and the research continues to make advancements. cystic fibrosis is tricky because the efficacy of these new drugs is determined by one’s exact genetic combination. June has a less common gene meaning that she’s not a candidate for these new medications, but there’s much hope that more medications will become available in the future. Our doctors seem very hopeful that June’s generation will be living into their 50’s, 60’s, 70’s and maybe even have normal life expectancies. But more importantly, they’re expecting her generation to have better quality of life.I’ve spent a lot of time grieving over June’s diagnosis. I’ve been angry, sad, resentful, regretful, hopeful… the list goes on. I spent a lot of time in denial too. But I think I’m finally moving on to acceptance and ready for the challenge to fight like hell. And the only way I know how to fight is by focusing on what I CAN do. I simply can’t sit around and wallow in the limitations or the sadness. I have to find a more positive perspective for myself, for June, and for my family. I have to make lemonade out of lemons.

I realize that June’s genetic disorder isn’t going to be cured by a perfect diet. I’m optimistic and hopeful, but also realistic; I WILL be loading her up with medications and antibiotics when instructed to do so. However, diet can drastically affect the outcome of her disease and for any disease for that matter. Although the doctors have identified her two genes resulting in the cystic fibrosis defect and we can predict the severity of her disease based on past cases, her disease isn’t black and white. Genes interfere with each other, the environment, diet, and a whole slew of other factors, which is why we can’t say for sure how severe June’s disease will be. This is not only true for June, but for any person who is genetically predisposed to certain diseases – it’s not black and white. Genetic interactions aren’t well-understood; they’re just too complex. So, my point is that even though we know there’s potential for severe disease, we’re going to do what we can to live a healthy lifestyle and help keep that disease as mild as possible.

In my research I came across a blog written by a cystic fibrosis adult (50 years ago, people with cystic fibrosis never grew to be adults, so this used to be a rare occurrence), “At the Roots: Natural Healing for People with Cystic Fibrosis and Chronic Disease.” The author is studying to become an herbalist and has some great recommendations for folks with cystic fibrosis and it all starts with a healthy gut flora. Hmmm… well that’s interesting, because I’ve also done quite a bit of research on allergies and asthma for which the recommended treatment is to improve your gut. But it doesn’t stop there… thyroid problems, IBS, schizophrenia, autism, osteoporosis, celiac disease, eczema, chronic constipation, fatigue, yeast overgrowth, depression, arthritis… shall I go on? I mean, really, the list is quite extensive. It’s apparent to me now more than ever that a good gut is going to be one of the key factors in June’s fight against cystic fibrosis.

As I move forward with supporting June in the development of a healthy gut, I’ll also be sharing more about digestive health on my blog, because although chances are that you don’t have cystic fibrosis, we can all benefit from strong digestive fire. My first of many-to-come gut posts will be featured in my upcoming newsletter. You can sign up below to have first dibs on that gut-feeding goodness!

Thanks for reading and for supporting me in the good fight! I’d love to hear from you below in the comments section to hear about your own personal fight and how a healthy gut could help you win!