A Patient Advocacy Story
Breast Reconstruction Awarenss Day 2015, a patient advocacy story, begins with an inspirational moment; a moment that was a true catalyst to a new found purpose in my life. Where was the inspiration? Why would a patient become an advocate and subsequently an affiliate to promote a nationwide campaign for breast reconstruction awareness following a cancer diagnosis and mastectomy?
Easy answer! The plastic surgeon I chose to do my DIEP flap surgery and the patient liaison that was my first point of contact at their group WAS my starting point. When something feels right, I move on it. It was my moment of inspiration. I was asked to share my reconstruction surgery experience with other women who were considering the same type of surgery. I wanted to pay it forward and let other women know about this group, their skill, success rate, credentials, compassion and the support of all the staff in their office.
You Will Be in Good Hands
Women go through such an assault on their bodies after a breast cancer diagnosis. I wanted them to know, they were going to be in good hands and that they could move on with their lives after cancer. I anguished with young women who, although they did not have cancer, knew after finding that they carried the BRCA gene mutation were faced with a high risk of getting breast cancer. These were women who chose a prophylactic mastectomy to ease their mind of that risk and continue to be there for their young families. They wanted to know that they were going to be in good hands as their breast would be removed and replaced by their tummy tissue, a huge surgery, with recovery that limited snuggle time with their young children until they were fully healed.
The Beginning of the Blog
It made the most sense for me to start with a blog because I wanted to reach even more women and educate them about breast reconstruction options. Not knowing what the impact would be or how many would read it was a bit of a role of the dice. I worked hard to self-promote those blogs that I wrote. That was truly my least favorite part. It felt so self-absorbed for me to do this but I knew and read in many Word Press blogs that it’s just part of the process. I became my own marketing, writing, editing and data analytic department. I made laughable, embarrassing technical mistakes but I continued on because I was inspired by the need to educate and inform other women. They were fueling my passion. I called on plastic surgeons, friends, family, and other patients to help me. I am so grateful for all those who have patiently seen me through this journey.
As the number of ladies I contacted through PRMA grew, I realized that not everyone may be able to go to San Antonio due to proximity and ability to travel. I made it my mission to start connecting with other plastic surgeons on Twitter. I opened a closed Face Book group that I administer so that I could share my own personal experience, moderate discussion questions and concerns from members, and share evidence based research on breast cancer, health and breast reconstruction.
The Private Face Book Group
As much as I wanted to send everyone to my plastic surgery group, I knew there had to be other qualified surgeons across the U.S. that might be closer to other patients. I researched plastic surgeons and vetted them carefully before I added them to my Face Book group. I felt their passion and commitment to patients as I shared evidence based medicine with them on Face Book through social media connections via Twitter. My hope was growing for other women to connect with these qualified surgeons. These surgeons answered questions for women on Face Book and shared their precious time with them to ease their fears and educate and inform them about breast reconstruction and the intricacies of the surgery.
I talked to Courtney at PRMA about being an affiliate for the American Society of Plastic Surgeons on BRA Day, October 21, 2015. I knew this was an opportunity for me to get the word out locally. I respected her expertise since she had previously planned PRMA’s successful BRA Day events. She gave me sound advice. Start out slow and small. Keep it focused and fun. With the help of a friend I met through Twitter, Alene Nitzky, we successfully had the first BRAs to Tucson event with the University of Arizona Cancer Center. She traveled all the way from Colorado to help me. She gave me sound advice about contacting media. I want to share a story that was published locally in our paper by reporter Logan Burtch-Buus of the Explorer. Here is the link to that story from Tucson Local Media.
Gratitude for Social Media Connections
I’m so grateful for all the Social Media connections I have made and the support they have given me. But, as I began this blog I stated, my patientadvocacy began with a moment. That moment was being asked by Courtney at PRMA to share my story. That moment was inspired by my plastic surgeon who at our very initial consult pulled his chair up in front of me, looked me compassionately in the eyes and said, “You’ve been through a lot, haven’t you?”
Thank you Courtney and Dr. Minas Chrysopoulo for my moment of inspiration! My heart is full and grateful. Thank you American Society of Plastic Surgeons for continuing to work hard to promote breast reconstruction information and education through BRA Day.
I am one voice inspired by many!