Posted on July 06, 2016 |
This blog post was written by Karen Deitemeyer, COPD State Captain and community advocate.
Do you remember what the Lorax said? “Unless someone like you cares a whole awful lot, nothing is going to get done. It’s not.”
Well, that’s pretty much how I feel and why I have been an advocate for various issues for most of my life. I remember, as a child, going with my mother to various American Cancer Society (ACS) events in my hometown – selling daffodils to raise money for the ACS.
Then, when I was a teenager, my mother had to have a radical mastectomy. For many years as an adult I advocated for more and more research dollars for the ACS, for more support and more awareness of breast cancer. The increased funding has led to less disfiguring, less radical surgeries, and when I was diagnosed with breast cancer in 2008, I had many more options, and a much greater chance of survival than my mother did.
I was officially diagnosed with COPD in 2001, but it wasn’t until a few months after my breast cancer surgery in 2008 that I realized that although breast cancer has many advocates, who raise lots of funds and awareness, there was nothing comparable for COPD.
So I chose to focus my energy on COPD – to speak to decision makers, to other patients, to providers, to anyone who would listen. COPD has been ignored for way too long!! The death rate from COPD is greater than the death rate from breast cancer and diabetes combined, yet those two diseases receive far more funding and awareness.
So what can you do? You can join the COPD PPRN (Patient Powered Research Network) and be willing to share your medical information with researchers.
You can become an advocate for the COPD Foundation. You will receive emails when there’s an issue that affects the COPD Community and then you can email, call or visit your local elected officials to help them to understand what we need and why.
You can share information about COPD on social media sites, such as your own Facebook page, or Facebook COPD support groups. You can join the COPD Foundation’s COPD360social social media site and share your knowledge and experiences with others.
You can contact career institutes and ask if you can come and speak to their respiratory students about living with COPD. You can join a Better Breathers Club or other local support group and encourage newly diagnosed patients. You can set up a table with information about COPD at community health fairs. You can bring information about COPD to your doctor’s offices.
I’ve advocated at the local, state and federal levels for several years now, and I do feel that we are beginning to be heard. Won’t you please help?
Advocating for what you believe in is crucial – if you don’t ask for it, people assume you don’t need it.
That Lorax knew what he was talking about!!
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