<p>Are their specific resources available to help parents with child that has cystic fibrosis match colleges for her?? Threads here? Association sites, etc…thanks!!</p>
<p>You probably will get more answers if you connect with an organization that has to do with cystic fibrosis.</p>
<p>One possibility cysticfibrosis.com</p>
<p>Another: <a href=“http://www.cff.org/AboutCF/[/url]”>http://www.cff.org/AboutCF/</a></p>
<p>I think it’s always a good idea to start with the CF Foundation website, even if there’s nothing there, you can always call. Given the improved outcomes with care at CFF approved centers, cities where those are located will help continue good healthcare maintenance more readily than if your child has to travel to get to a Peds Pulmonologist.</p>
<p>I’d also ask your pulmonologist if they have any resources. I just started as a resident in pediatrics, and I’m always impressed by how close most peds pulmonologists become with their patients, it’s a fairly unique doctor/patient relationship, and they’ll certainly have your child’s best interest at heart.</p>
<p>The kids with chronic illnesses that I have known have often gone to school at a local university but living on campus and acting as thought they lived far away. But in times of medical crisis, their family, trusted medical professional and new college friends were nearby.</p>
<p>Small schools (like liberal arts schools) often can do a more personalized job of meeting specialized health care needs so looking for small schools located near to major medical resources in case they are needed would make sense.</p>
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<p>This could be a very practical idea. My son (who has a chronic medical problem, though it is far less complex than cystic fibrosis) found that one of the advantages of attending a college an hour’s drive from home was that he could see the same doctors year-round (with a little help from parents in terms of transportation to medical appointments). </p>
<p>If there are colleges your daughter likes within a couple of hours’ drive of home, she might find that the convenience of not needing to have two separate sets of doctors would simplify her life greatly. And there’s no reason why she can’t do this while living on campus and enjoying as normal a college experience as her health permits.</p>
<p>One problem for college-age kids with chronic conditions (CF, Marfans, others) is that they are aging out of pediatric care, and adult internists often don’t know how to deal with them, and may not be expert in managing their disease. You may want to start with the local Peds CF clinic for colleges you are interested in, and see where their “graduates” are getting their care.</p>
<p>A student who has a disease or disability that will makes college particularly challenging might want to check out the PLUS program at Muskingum College, in Central Ohio. They give students a lot of support.
[Muskingum</a> College: About Muskingum College](<a href=“http://www.muskingum.edu/home/about/overview.html]Muskingum”>http://www.muskingum.edu/home/about/overview.html)
[Muskingum</a> College: Admission](<a href=“http://www.muskingum.edu/home/admission/plusapply.html]Muskingum”>http://www.muskingum.edu/home/admission/plusapply.html)</p>
<p>I also really like the idea of attending a university close to home and living on campus and otherwise acting as if you are far from home - this sounds like a particularly good plan for a kid who will often need access to the doctors he or she saw during high school.</p>
<p>Sounds like you’ve gotten a lot of great advice so far. My kids have chronic health issues (tho not CF). They are both at a school 3000 miles & a 5+ hour plane ride from our home but so far have been healthier there than they are here. Before they enrolled at USoCal, we spent a lot of time talking with the disabilities office as well as the dean of the engineering school (because S was enrolling in her school). They reassured us that they work well with kids with disabilities and encouarged us to have the kids come to school a week ahead of time and have appointments with the docs at their family practice medical school clinic, whom they could go to for any medical issues that arose while they were attending school (particularly if the issues were beyond what the student health center could handle). It was a good plan and worked well for us with each of the kids.</p>
<p>We were VERY surprised that the smaller “nurturing” christian school we had originally thought would be more understanding and work more with us & our kids about their chronic health issues was absolutely inflexible & unwilling to work with us & S–we promptly turned them down & told them why (their admissions counselor was surprised at how unhelpful we found their staff). Our experience was that generally the larger schools seemed to work harder to be sure our kids had great experiences in school than the smaller ones. UAz also sounded like they would work with us & our kids to help them have positive experiences but S was not interested.</p>
<p>It really was great spending time talking to the person in charge of the disabilities department (on the phone, via e-mail & in person) and meeting some of their staff. It was reassuring for us & the kids. The schools which were not helpful over the phone got black marks in our books and we’ve told others about them so they aren’t surprised at how unwilling the schools are to work with the kids.</p>
<p>I think for a child with a chronic illness, aside from easy access to high quality medical services, the most important thing to look for is an excellent advising system. You want there to be an adult who has a very personal interest in the well being of your child and who will go to bat if the inevitable happens and your child needs consideration given for exam and academic schedules and such. I was diagnosed with cancer in my sophomore year of college and the primary reason I made it through was that my advisor personally advocated for me and made all sorts of logistical issues go away. </p>
<p>As to one of the comments above, in my first month as a pediatric intern I took care of CF patients. They ranged in age from infancy to 42 years (!) because in that era, adult pulmonary specialists had not had enough experience with CF and so pediatricians continued to care for them throughout their lives. Being in close proximity to a hospital with lots of CF experience is very important.</p>