Tuesday, July 30, 2013

Esiason Webcast

Today, Novartis and the Boomer Esiason Foundation sponsored a webcast about CF patients planning for college and beyond. (If you would like to watch it, the webcast will be uploaded on the Boomer Esiason website in a few weeks). More CF patients are going to college, getting married, getting a job, and living into retirement. Because of this, CF patients need to think about the future and know how to balance CF with the craziness of life. There were three people who spoke on the webcast--Gunnar Esiason, who just graduated from Boston College, Ginny, a mother of two daughters with CF, and a CF social worker. It's encouraging to see these people managing CF with college and "grown-up life".  Because CF patients don't have much face-to-face contact, it's difficult to know how other CF patients are managing everything we must deal with. 

I loved several points said on the video. Gunnar, Ginny, and the social worker all stressed the importance of having strong social connections. CF is a hard enough disease by itself. We can't go at it alone. Having people around who know your medications and what they do, how CF affects you, and will gladly be an advocate for you and your health is so important for emotional and physical well-being. Sydney Esiason, Gunnar's sister, said something in the webcast that hit home for me--"Sometimes CF patients aren't as vocal about how they're feeling because they have a higher tolerance for sickness". Truth. This makes it difficult for us to open up, especially to non-CFers. However, having close friends in college who are there for you and who will ask you specifically how you're feeling is key to staying healthy and enjoying college life. 

Gunnar also seems very similar to me in the fact that he is very compliant with his treatments. His rule in college was to always do treatments before going out. As much as it is difficult sometimes, treatments  must come first. Keeping up your health is vital to having a good quality of life. 

All three members of the panel also spoke about signing up with the office of disabilities. Although all CF patients would love to think that they will make it a semester without getting sick or missing class, the probability of that is very small. I am a student with OALA at Baylor, which is the disabilities office. OALA gives me that extra security that I need because of my CF. I know that my professors will know about my health limits and will be willing to work with me. I also know Baylor is going to back me up when I need it most.

College is an exciting time, and I love that people in the young adult CF community as a whole are living longer and getting to have a more normal college experience. But we must also be aware of our limits. "Patients with CF cannot live like they're in an animal house, which most college students do." Wise words, Gunnar Esiason! 

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