Patient Perspective: “So Much to Gain” at Patient~Family Conference
June 7, 2013 – “You have nothing to lose but so much to gain!”
So says Rosemarie Walto-Campagnone when asked what she would say to someone considering attending a CAF Patient~Family Conference. (Click here for information on the 2013 Conference, June 28-30 in Philadelphia.)
Rose, who has thalassemia, doesn’t know exactly how many Patient~Family Conferences she’s attended but says she has been to “pretty much all of them since 1989!” That’s quite a feat and demonstrates both Rose’s commitment and the value of these Conferences.
“The doctors provide really important information at the Conferences,” Rose confirms, “but an even bigger reason that I keep going is the patient interaction. You can really learn something from a patient that has already gone through, or is currently going through, something that you’re experiencing. At the Conferences, you make lifelong friends that you can relate to. You make connections with your ‘blood’ brothers and sisters; only another “Thal” understands how you feel – because they’ve been there, too! ”
“The amount of information you can pick up at the Conference, whether medical or personal, is amazing,” she says.
“If you’re thinking about going but not quite sure, I say, ‘Take a chance and go! You have nothing to lose but so much to gain: friendship, information. I learn something every time I go, whether it’s little things you can do to make using Desferal easier or what to mix your Exjade in that won’t upset your stomach. Again, lots of information from people have been there and done that! You can even find a ‘go-to’ person you can call when you don’t feel like using your medicine; it helps to have someone encouraging you.”
And Rose thinks there’s another plus, too. “It’s exciting to visit places you’ve never been before. The first time I went to New York City was for a Conference – and I just live in upstate New York!”
Rose ends by saying that the 2012 Conference “was well put together and informative, plus you had time to hang out with old/new friends and catch up!”