Wednesday, October 17, 2012

Show and Tell: The School Debate

Every time CF makes national headlines (much less an appearance on The Today Show!) everyone in the community seems to sit up and take notice. Most of the time this is an exciting moment: there are articles on new medical breakthroughs, spotlights on outstanding or inspirational community members, and the occasional awareness piece that makes us all super grateful at the amazing people we have in our corner.

And then, sometimes, it's not.

Today several news sources featured a version of this article, about a young man who was released from school after administrators learned that he "carried the genetic marker" for cystic fibrosis. From my own personal reading of this and related stories, the story seems to revolve around a boy who was asked to leave a northern California middle school after it was discovered in his medical records that he has some version of genetic CFTR mutation. The school apparently acted out of an abundance of caution because there is another student at the school who indisputably has CF, and the school was concerned about the potential for cross contamination. What the article DOES NOT make clear (from my readings, at least) is whether the boy in question is a carrier (i.e., has one CFTR mutation but not the two required to cause cystic fibrosis) or whether he has abnormal mutations that his parents and doctors believe are non-disease-causing. The article above refers to him as a carrier but also mentions that he has a "combination" of genetic markers and that his family and doctors are "monitoring him closely" to make sure he does not actually have the disease. In other words, I'm not sure what the boy's exact medical status is -- nor should I be, necessarily. Those facts are generally between a patient and his/her doctor (and the parents in the case of a minor) and part of the issue with this particular story might be whether such privacy rights were violated in the first place.

Personally, I have several friends with CF, both pre and post-transplant. It's my choice to do so, and I like to think I'm careful when it comes to cross-infection concerns and keeping myself healthy. I want to emphasize that people with CF can have relationships (both in person and through other mediums, like Facebook or CysticLife) and that these relationships -- far from simply being risky and dangerous and scary -- can actually be incredibly helpful psychologically. Our relationships with others who share our disease help remind us that we are not alone, help inspire us to keep going and to do great things with our lives, help drive home the importance of medical compliance and self-accountability, and help make us feel part of something larger and stronger than we are as individuals. In other words, people with CF are important to each other because they give us a community of others like us -- not to the exclusion of others but to the benefit of ourselves (and our sanity).

That said, I understand the debate. I understand the fears. And, you know, I'm not in middle school, so I totally get that parents of middle school children might be more cautious about this particular issue than I am as a full grown adult with adult friends. So for anyone who might need a refresher, here's a good place to start, courtesy of the Cystic Fibrosis Foundation:

Living with CF at School: Guides for parents and teachers

Stopping the Spread of Germs: Handbook on staying healthy with CF (specifically addresses interactions between CFers and the notorious "3 Foot Rule").

At the end of the day, whatever the outcome of the case in question, one of the Cruel Facts about CF is that patients, caregivers, and parents are constantly having to make choices about their priorities in health and in life. There will always be moments of panic surrounding "should my child have this playdate?" or "should I study abroad and/or take this fast-paced job in my dream career?" or "ack! I've been invited to a party and I know it's going to be crowded and I think there might be cigarette smoke going on somewhere but I really want to go because all my friends will be there and so will that guy I like and I have to be normal sometimes and I really really REALLY hate this disease!" (Yes, trust me, it WILL happen.) I personally think it's up to us as individuals to educate ourselves (hint: the CFF and the BEF both have GREAT resources available) and our communities so that we're acting out of real understanding of ourselves, our priorities, and our disease. We can also help out by being open and honest, and by helping other people know more about our disease. Because knowing, after all, is half the battle.

Happy learning, everyone.


  1. Thank you for such a quick, and thoughtful, post on this topic.

  2. Ha. In first grade I sat next to a girl with the exact same initials as me and CF. We went to get our meds together at lunch---oh how heads would roll about that now. She and I are both alive and well at 31 to tell about it. Fortunately.

  3. I am confused, Piper. There is concern that one of the CFers is gonna cough and give CF to someone else? huh?

  4. Oh my! what a story for our community! Thank you for sharing this. I will share a little tidbit about me. I'm 29 with CF and my boyfriend also has CF. We have been together for almost a year and my lung function has actually improved. 15%! I've had fewer hospital visits and just overall health improvement. Crazy, but the support and accountability you spoke about really works for us. Now that being said, I am not promoting everyone to go out there and start dating each other! We met and had a connection and decided the risk was worth it to us. Falling in love before your first kiss is def different! We are both adults who take really good care of ourselves and each other. I wouldn't suggest that teenagers try it out because it is a difficult decision and one you cannot go back on. Ryan(bf)has been my greatest love and support. We are both glad we made the leap. We still follow the 3 ft rule with our CF friends. We know what each other culture but not everyone else. We respect our friends and do not wish to make them ill. But Piper, you are right, you can still have a relationship with another CF patient, you just have to be careful and respectful. This disease is isolating and we need the sense of community so very badly. I never knew any other CFers growing up and I was afraid to be around others up until a couple years ago. I felt so alone. It saddens me to hear what happened to this child. Whether he had CF or not. I'm sure the other child (w cf) has a horrible stigma about being around other patients. The facts are we never know who we are going to be around in public. I judged a beauty pageant with a fellow cyster who I didn't even know had CF at first. We even sat on the same panel. Life happens people, try not to freak!

  5. Melissa, I think the question is more about whether this child with some form of relationship to CF (whether a carrier or someone with atypical CF or CF-related metabolic syndrome, explained on the CFF website) might be a danger to the child who does have CF and is already enrolled at the school. So it's more about cross-infection between CF "patients" (or carriers, or non-disease-causing mutation holders) than it is about "giving" CF to another, healthy child. The latter concern is, as we all know, totally ridiculous.