Casey Berna, an endometriosis blogger and long-time Endofound volunteer, uses her voice and time to raise awareness for this disease. Follow Casey’s blog “Chances Our,” watch her new video “EndoTruth: Vital Messages to the Medical Community from Endometriosis Patients,” and learn more about her commitment to Endofound’s events and The ENPOWR Project
Endofound: How long have you been a volunteer, and what first inspired you to get involved with the endometriosis community?
Casey: In high school, I fell in love with volunteering. My experiences working at the local soup kitchen and building houses in Appalachia inspired me to study social work in college and graduate school. I wanted to be educated, to be able to have a greater impact on communities and populations in need. I continued volunteering throughout college, traveling to places like Calcutta and Tijuana, learning more about the challenges facing women and impoverished communities globally and working with and learning from community leaders fighting for social justice. I, like many women, had a long road to my endometriosis diagnosis, a road filled with dismissals from many doctors, ineffective surgeries and inadequate care. After my diagnosis, I realized that I was a part of a community in great need of support, education and awareness.
Endofound: What made you want to support the Endometriosis Foundation of America?
Casey: The Endometriosis Foundation of America has experienced tremendous growth in the past couple of years. They have a growing, energized staff dedicated to educating adolescents and creating awareness and education events for patients and the medical community. I see them making connections with the endometriosis community and striving to be an organization that provides quality resources for both patients and society at large.
Endofound: Why is it important for others to support Endofound?
Casey: If you, or someone you know, have been affected by endometriosis, supporting Endofound is a great way to feel empowered and affect change for the community in a significant way.
Endofound: Can you share a little bit about your personal story with endometriosis?
Casey: My period came at the end of my freshman year of high school and with it, painful cramps and gastrointestinal issues. These issues progressed and for years, many doctors had no answers for my medical distress. My appendix looked “funny” and was causing me excruciating pain, so I had my first laparoscopic surgery to remove it just after college. From then on, my health continued to decline. At 26, after experiencing infertility, my husband and I went to see a reproductive endocrinologist, who diagnosed me with endometriosis. After fertility treatments, we were grateful to conceive our daughter. We tried having more children, and after many failed treatments, miscarriages, and a surgery to remove my gallbladder, which also “looked funny,” I was in constant, debilitating pain. Endometriosis was impacting many systems in my body and I was very sick. It was then I met Dr. Seckin, who has since performed two excision surgeries and brought back a quality of life that I didn’t think was possible. I now work with endometriosis patients globally, coaching them, giving them support and counsel, to help them navigate the disease.
Endofound: What kinds of activities have you been involved with when supporting Endofound?
Casey: My first experience with Endofound was when I attended their amazing Awareness Day for patients a few years ago. Since then, I have tried to attend both Endofound Awareness Day and Medical Conference every year and write articles and share ideas from the events through social media, so patients everywhere can benefit from the information gathered. Last year, I presented at Awareness Day, where I spoke about my work supporting endometriosis and infertility patients.
I also worked with Endofound to promote Endofound on TODAY last year during Endometriosis Awareness Month. It was so touching to see patients travel from near and far to gather on the Today Show Plaza, dressed in Yellow. It was also wonderful to get feedback from patients all of the country who saw us on television that chilly morning.
Recently, I have been trained as an ENPOWR educator. I am hoping to bring the ENPOWR program to adolescents in my new home state of North Carolina. I am excited to be a part of a program that is already thriving in New York schools.
Endofound: Why are Endofound awareness initiatives like The ENPOWR Project and Awareness Day important?
Casey: Everyone needs to know about endometriosis. The general lack of education and awareness surrounding endometriosis, a disease that impacts 1 in 10 women, is distressing. The ENPOWR Project is educating adolescents about endometriosis, while also teaching them to be advocates for their own health. It is an important program that is making a difference.
Awareness Day is my ABSOLUTE FAVORITE day of the year. When I first went, years ago, it was the first time I met other women with the disease. It was the first time I was immersed in endometriosis education, awareness and support. After feeling isolated for so long, it was the first time I didn’t feel alone. Now, as an advocate in the community, Awareness Day is a time for me to help newly diagnosed patients and meet up with members of the community who have now become dear friends.
Endofound: Describe the impact you have seen in the community through the work you have been involved with.
Casey: Awareness Day makes a huge difference for the patients that attend. The articles, tweets and Facebook posts from Awareness Day help to educate and unite members of the online endometriosis community. I have just started working with The ENPOWR Project, but I have already heard wonderful stories about the incredible impact it has on the adolescents who have experienced it, with some going on to get diagnosed. I am looking forward to being a part of it.
Endofound: How do you think things would have been different for you had you seen an ENPOWR presentation at your school?
Casey: Had I seen an ENPOWR presentation, I would have known in high school the reason for my pain, fatigue and my gastrointestinal issues. I wouldn’t have wasted years of my life undergoing many invasive gastrointestinal tests that would always come up negative. I wouldn’t have believed my gynecologist when she told me that I had a low pain tolerance. I would have found an excision specialist first, someone who could have given me a surgery that would have helped my bowels, bladder and probably removed my diseased appendix and gallbladder in one shot. I would have been gentler with myself, knowing that I had a debilitating disease. It would have made all the difference.
Endofound: What advice would you offer for anyone who might be interested in volunteering for Endofound?
Casey: I encourage all patients to go to Awareness Day if they can and if they can’t, share and participate in the online conversation surrounding it. I encourage patients to ask their local high schools to invite The ENPOWR Project to their school. Are you a high school principal, counselor, teacher, or have connections with those who are? Send them the link to the program, so when the ENPOWR Project is ready to expand, you will be ready for them!
For more information on Casey’s counseling services for endometriosis and infertility patients, visit caseyberna.com.
THANK YOU CASEY!