Posted by Tyler Moon on January 06, 2016
The Patient Advisory Council (PAC) is so simple, yet so complex. It’s simple in the sense that each member is a young patient with IBD and together we are working within the community to improve care and make a difference. It’s complex in the sense that each PAC member brings their own unique experiences, knowledge and know-how and applies these in different ways to accomplish our goals. And there is even another layer of complexity when you consider the battles my fellow PAC members face daily from IBD. The PAC is diverse and each person’s unique contribution is crucial to the achievement of our goals; many of us have written or talked about what we do for the PAC, but what about the reverse?
What has the PAC done for us?
Often overlooked, especially by myself, as we scramble to keep track of all the tasks and projects to be accomplished, we bypass just how much we receive by simply being a part of the PAC.
Being an IBD patient, and growing up with it, is far from easy, though that’s no newsflash (hopefully). It can be scary, isolating and down-right embarrassing. Simply put – the PAC is great because it connects patients with one another. If you asked our 20 members, I guarantee most would say they didn’t want anyone to know about their IBD, so they suffered in silence. Being connected with other patients allows us to have open dialogue about the disease with assurance that although most people cannot understand, the people in this group do understand and care. Far from being simply a support group – the PAC has a strong foundation of support for its members who know they are accepted, understood and cared for.
Beyond connection and support, the PAC also allows us to stand up against a disease that has affected our lives so much. It empowers us, as patients, to speak out and advocate for those patients not ready to speak for themselves.
I asked the rest of the council what the PAC has done for them and here are some of their answers:
The PAC has….
“Given me a group of similar-minded people who have allowed for real changes to be made to healthcare in ways patients want change to be made”
“Allowed me to open up about my disease and has given me the chance to expand my support system”
“Given me the opportunity to raise awareness and educate others about my disease”
I believe these three comments demonstrate the power of the PAC. The PAC goes far beyond being an engine for improving care and advocacy for kids with IBD. It is a blessing in itself, one I am very glad to count among my list of blessings in the New Year.
The PAC really harnesses the power of patients; the power to make a difference by connecting, supporting one another, raising awareness, educating, bringing about change and so much more.
Join the PAC & Make a Difference in 2016!
Start off your year by joining us! We are looking for new members and would love to have you with us!
The PAC wishes everyone a Happy New Year. We are all thankful for all that the PAC has done for us. Look out for us in the New Year – we have lots coming!