- Meet Consumers/Patients
|Tell Others: HPN Awareness Week|
2016 HPN Awareness Week, August 7-13, 2016
Explaining HPN—Your photos will help!
We’ll kick off HPN Awareness Week with our annual “Alive with HPN” video. Please send us a photo of yourself, doing what you like to do (action photos welcome), along with a sentence or two telling everyone what you would like them to know about home parenteral nutrition (HPN). Or make your own video and share it with us! We’d like to highlight anything useful to people on home IV and/or tube feeding—including your awareness videos!
Now’s the time to reach out to your local newspapers and TV and radio stations, if you are comfortable sharing your story. Call, fax, or e-mail the health editor, tell them HPN Awareness Week is coming up, and share what HPN has meant to you. Maybe share a noteworthy event in your life (an HPN anniversary, a graduation or wedding you’re thankful to have attended, etc.) around which they can build a story. There may be someone in your community who will be encouraged by reading an article about your experiences.
Wear your HPN Awareness Week pin and t-shirt, share them with friends, family, your clinicians...and help raise awareness!
Submit photos or videos to Lisa Metzger at firstname.lastname@example.org or The Oley Foundation, 43 New Scotland Ave. MC-28, Albany Medical Center, Albany, NY 12208, by July 27 (or sooner!).
Pins and t-shirts can be ordered online at www.oley.org, or by call Oley at (518) 262-5079/(800) 776-6539.
Give us a call if you’d like Oley’s help writing a press release.
Thank you to Baxter Healthcare for underwriting the pins and promotional materials for HPN Awareness Week 2016.
What can you do to help raise awareness?
2015 HPN Awareness Week
Thank you to all who participated in HPN Awareness Week this past August. You submitted photos for the video; shared buttons and wore t-shirts with the “Alive with HPN” logo; distributed press releases to local media and posted in online media; held fund raisers and gave school presentations. Together we acknowledged the challenges, as well as the successes, of living with home parenteral nutrition (HPN), while focusing also on the normal day-to-day things that bring us all joy and satisfaction—family, friends, work, school, community, hobbies, travel, and more.
Mark your calendars for next year’s HPN Awareness Week, August 7–13, 2016, and plan to join in the fun!
LifelineLetter, November/December 2015
Thanks to everyone who participated in HPN Awareness Week. Whether you put out a press release, shared the logo on your Facebook page, or planned an event, your efforts are meaningful. Thanks to all of you who submitted photos and shared videos—the “Alive with HPN” video on Oley’s You Tube channel had almost 1000 viewings!
We send a big thank you, too, to Baxter Healthcare for a grant to support HPN Awareness Week. Because of this grant, we were able to distribute 3000 Alive with HPN buttons. The Baxter team in Northern Illinois also held a Jeans Day fundraiser to help raise awareness—raising almost $600 for Oley—and NPS Pharma planned a company-wide team-building event that week. Over 150 employees enjoyed a scavenger hunt, lunch, and competition to raise $2,500 to support Oley programs (and $2,500 to support SBS Foundation and HypoPARAthyroidism Association, too)! Joan Bishop and Rose Hoelle were on hand to share information about Oley programs and accept the check. A good time was had by all.
What HPN Means
There was a lot of discussion this year about the term “HPN” and what it means, both to you as individuals and in the broad sense. “HPN” stands for “home parenteral nutrition.” It is parenteral nutrition (a nutritional solution delivered intravenously, through the bloodstream) administered at home. Parenteral nutrition is also commonly known as “total parenteral nutrition,” “TPN,” and “hyperal” or “hyperalimentation.”
Why do we use “HPN” instead of “TPN”? We no longer refer to it as “total” parenteral nutrition because the solutions, although life sustaining, do not contain all of the nutrients that are present in our diets. Another reason we do not refer to it as “total” PN is that for many consumers it is not their sole source of nutrition. They may be taking some food by mouth or perhaps supplemental tube feeding.
Further, we want to acknowledge that the situations so many face when they have PN at home, vs. in the hospital, can be very different. We also hope to convey the very important message that people are living their lives at home on PN, and that if PN is a necessary part of your present and future, there are resources available to help you.
There are lots of ways to say it besides “HPN,” including “home PN” and “home TPN,” and we appreciate the insights and suggestions members have offered on the terms and how we use them. It’s an important and helpful dialogue.
On the Oley Facebook page, one mom wrote what “HPN” means to her: “To me HPN includes those who rely on IV nutrition for all their needs (TPN) and those who use IV nutrition to meet some of their nutritional needs, but may also eat or do tube feeds...it also implies that this is a way of life at HOME, which is huge for my daughter!”
What’s YOUR Alive with HPN story?
“At first I found it difficult to schedule my feedings around any kind of social activity, but now if I have something planned during my normal feeding cycle, I just put on my backpack and go. People hardly ever even notice it.... TPN has saved my life—made it possible to have a quality of life that I wouldn’t have had without it. I am happy to be ‘Alive with HPN.’”
—Candace, Oley-Inspire Forum
Updated July 21, 2016