I was diagnosed with cystic fibrosis at almost 20 years old. When I told people about the diagnosis, I was struck by one remark, “well you don’t look like you have CF.” And it’s true. I can gain weight well, and I don’t use supplemental oxygen or a feeding tube. I don’t have the stereotypical CF symptoms — on the outside anyway. Throughout the years, that remark stuck with me, and I didn’t want to seem like I was taking away from other, more severe cases. I am blessed to only deal with a milder form of cystic fibrosis.
A few years after my diagnosis, I had my daughter Karleigh. To our surprise, we found out my husband is a CF carrier! He had only heard of the disease once I got diagnosed. So now, we have a daughter with CF, and guess what? She also has a mild case, and we started hearing the same comments that I once heard about myself, “well she doesn’t look like she has CF.” But when I started hearing this about my daughter, my perspective changed. I didn’t care as much about advocating for myself, but once I had Karleigh, I wanted to be her advocate!
I now realize that having a mild form of CF is still having CF. I take Trikafta and Creon every day. Karleigh takes Creon and has Pulmozyme breathing treatments every day. We are very fortunate to have mild cases, but there’s no need to downplay our diagnosis. We do daily life differently than your average person. Snacks on a car ride aren't as easy as giving her some Goldfish and calling it good. She has to take her enzymes (Creon) first. Coughing is normal for us, and we aren’t contagious. Don’t offer Karleigh snacks because as badly as she may want one, it may not be worth the hassle to also get out the applesauce so she can take enzymes. I have to make sure my inhaler is around just in case I need it. We have to watch Karleigh’s breathing patterns because she can’t tell us she’s out of breath — she’s only a year old. We have to remind people who take care of her about what she needs to stay healthy. We make sure we always have a good stock of fruit so we can have food without taking enzymes. Oh, and while I’m thinking of it, did I pack our enzymes?! Because I’ve forgotten them a time or two.
Nights with the grandparents mean also making sure we packed her nebulizer so she can take her breathing treatment the next morning. Not to mention, when Karleigh was a newborn, I felt as if I had to always keep my eyes on her because she spit up so often — I was scared to death that she would choke on her spit up and die. And then I would wonder if I should make another bottle since she just spit it all up, or would she just throw that one up too? I stay at home with Karleigh for now, but when I go back to work, will they understand that I have to take time off so we can go to our specialty care that’s two hours away?
While these circumstances aren’t life threatening, they are still things that we have to consider and do to live our daily lives. We are grateful that we only deal with these things, but we still have struggles. I’ve survived our first year together of caring for a baby with CF along with learning to be a mom for the first time.
It wasn’t until I had to care for my child with CF that I realized those with mild CF can advocate for a cure too. I used to think that since I didn’t have as severe a case of CF, that I should leave speaking up to those who struggle more than me. But now that it’s both Karleigh and me, I know that we can also recognize the smaller struggles.
We applaud researchers, doctors, and advocates for helping our mild cases by caring for us too. We applaud them for finding medicines to help us. We applaud them for continuing to research to help others who are still waiting for the medicine that helps them. We advocate for all who have cystic fibrosis. Don’t let the comments get to you. You deserve to be advocated for too, no matter where you fall on the CF spectrum.
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