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Show and Tell: The School Debate

Posted Oct 17 2012 4:40pm
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.
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