The morning started off with a great presentation by the directors of the pediatric and adult CF care centers, talking about where our care centers stand compared to others nationally. We are one of the few centers that has both a pediatric and an adult care center, and are even luckier to have a few doctors that see patients in both, aiding in the transition from child to adult care. The the CF Foundation talked about some of the work that they do and events coming down the pike. After that, I had the chance to talk for a few minutes about advocacy. I could go on for hours, but I focused on the CF Foundations Policy Agenda and how we, as parents and patients, need to be involved to really make a difference.
The next speaker was the hit of the day, in my opinion. CF patient and blogger Ronnie Sharp from RunSickboyRun gave a great speech about his life with CF and the tricks that CF has played on him throughout his life. The main things that I took away from his story is that you control your own fate. Sure, we might have some bad cells that we're dealing with, but adhering to your treatments and seeing the doctors regular and taking control of your disease so that it doesn't take control of you are some of the things that are going to help you make it. A lot of people, self included, talk about how CF is a progressive disease. And he put some perspective around that, saying that life, in general, is a progressive disease. We are all going to get older. Our health, regardless of whether we have CF or not, is going to decline over time. When we put such a negative connotation around how someone with CF is just going to continue to decline in health, it makes it hard to focus on all of the positive and all of the opportunity that that person may have. Like if your health is going to go downhill anyway, why bother! I don't want Drew to have that attitude, ever. Or any of my kids! While I know that CF does get worse over time, often times out of our control and despite our best efforts, i'm going to focus on all that we can do to keep it going right. He suggested not comparing yourself to anyone but yourself and simply striving to be better than you were yesterday. It was a really really great presentation by Ronnie, and if you happen to want to watch it, you can click here and fast forward to about the 1:15 point in the presentation. Its about an hour long but its such a great speech!
The afternoon started with a couple of breakout sessions. Drew's doctor gave a presentation on the transitions of care from parent to patient. It wasn't super relevant as we have some time before Drew will be responsible for his own care, but interesting nonetheless. After that, we heard a dietitian talk about ways to ensure CF kids are getting all of the calories and fat they need. Right now, Drew needs around 2600 calories a day to stay healthy, and that's not always easy to get in! Her suggestions are any dieters nightmare - add butter, cream, dressing, syrup, basically any topping to any regular food to beef up the fat. For anyone who doesn't understand the need for CF kids to have a high fat diet, read this and it will make more sense.
After lunch, we heard from a doctor talking a lot about CF related diabetes. Unfortunately many people with CF develop diabetes and it just becomes something else to manage. She also touched on bone density problems in CF. I hadn't heard much about this before but it was interesting to hear about the red flags they look for and the testing that is in place to catch problems before they become problems.
Finally, we heard from Dr. Clancy on the Latest in CF Research. So much great stuff is and will continue to happen over the next several years. There is so much hope for a cure right now. Several presenters said that if there was ever a time to be born with CF, now is it.
Here are links to most of the presentations from the day, broken out into the morning and afternoon sessions. The morning session included the presentations How Are We Doing - Cincinnati Outcomes and Highlights from the National CF Conference, News From The CF Foundation, and Ronnie's CF Bag of Tricks. The afternoon session presentations were Endocrine Issues in CF and The Latest in CF Research. All of it was totally great, and I'm so happy that this baby I'm having held off long enough to allow me to go!
No comments:
Post a Comment