Endofound: How did you first get involved in the endometriosis community?
Chandelis: I first got involved in 2014 as I was looking for a support group because I was going through a rough time with endo. I came across a support group in Virginia under the Worldwide EndoMarch and attended the 2014 march in DC. I was so empowered being around other women and it was like I had an epiphany, realizing that I was meant to help others with endo like me.
Teknika: I became involved after meeting two of the Founders of Virginia Hope (Chandelis Duster & Ronda Payne) at the EndoMarch in Washington, D.C. in March 2016.
Endofound: How long have you been an EduKit volunteer, and what first inspired you to get involved?
Chandelis: I have been an EduKit volunteer since March of 2016. Part of Virginia Hope’s mission is to educate young girls about endometriosis and it’s something I’ve always been passionate about. I was asked by Endofound if I would like to teach ENPOWR in Virginia and without hesitation, I said yes!
Teknika: I’ve been an Edukit volunteer for 2-3 months and this was my first classroom presentation. I have been a Health/PE teacher for the past 13 years and teach the reproductive system and Family Life every year. When I found out that the Endofound had a kit for the classroom, I became ecstatic. I know from teaching health there are lots of young girls having issues with their menstrual cycle and reproductive system. So to have this platform, I feel, is my duty and responsibility to educate these young ladies about endometriosis. Unfortunately, I was not familiar with it when I got diagnosed and had to seek out support and information on my own. Hopefully, with this kit the students will learn enough about the disease to find the resources that they need, should they ever need it.
Endofound: What made you want to support the Endometriosis Foundation of America?
Chandelis: The Endofound has always been a great resource for endometriosis. The ENPOWR project can change the lives of so many people and help those who are seeking answers. I think in order for us to find a cure and help others suffering with the disease, organizations should support each other and work together.
Teknika: The Edukit is what made me want to be involved. The earlier women can learn about this disease hopefully it will effect change in the treatment of Endo.
Endofound: Why are Endofound awareness initiatives like The ENPOWR Project and the Endo EduKit important?
Chandelis: Many girls are not taught about their bodies and how conditions like endometriosis could be a part of their life since it’s so common. Many girls go years of suffering and are misdiagnosed like I was before finding out what’s really causing them so pain. Until we find a cure, education is the key to helping girls and women with their pain.
Teknika: As a woman fighting the disease, I think it is so important to raise the next generation of women with the information that we did not have. In the school textbooks, there is generally 2-3 sentences about endo. In no way can young girls understand the magnitude of this disease and how it affects the body with so little information. The EduKit is providing the necessary education so that if and when a woman is diagnosed, she will have been exposed to endometriosis information in a way that not only offers her support but arms her with the correct information to advocate for her life.
Endofound: How do you think things would have been different for you had you seen an ENPOWR/EduKit presentation at your school?
Chandelis: If a program like ENPOWR had been around, my cyst probably wouldn’t have gotten so big and my pain could’ve been managed earlier. I would’ve had a higher self-esteem in school and I wouldn’t have gone through the humiliation of a doctor telling me I was making my pain up.
Teknika: I would have been able to recognize symptoms sooner, and be diagnosed earlier.
Endofound: Can you describe your experience presenting the EduKit to high school students?
Chandelis: Teaching girls about endometriosis has been one of the most empowering and rewarding experiences of my life. The students were completely engaged and had many questions. It was also emotional. One girl in our ENPOWR class started crying, telling us how much pain she has on her cycle and about the treatment she is on. She is only in the 9th grade! Looking at her I saw myself because I was going through the same thing at her age with no answers as to why I was hurting every month. As heartbreaking as it was to see her cry, I’m happy I was there to teach her. If she does have endo, she doesn’t have to wait years continuing to suffering because now she might have an answer to her problems. Teaching ENPOWR really hit home for me as to why educating young students is important.
Teknika: My experience presenting the Edukit was enlightening to say the least. The young people that we shared this information with were eager to hear about this disease. A few ladies have family members who have suffered from endo and this gave them a better understanding for what that person was going through. They came to understand that this disease has no age, color, or size. Some even felt that they were experiencing symptoms of endo themselves and now they had the information to go home and talk to their parents about this.
Endofound: Describe the impact you have seen in the community through the work you have been involved with.
Chandelis: I have literally seen lives changed. By writing and sharing my own story, women are no longer ashamed to tell their own stories. Women email me and tell me, “thank you for sharing your story, I too have endometriosis.’ By working with legislators and getting proclamations signed, Virginia HOPE has made officials realize how important endometriosis awareness is. People email and message us asking us for help as well as support. People also want to get involved in spreading awareness; even doctors want to help.
Teknika: We have sparked conversation and support for this disease. The girls we taught the EduKit to have been wearing their yellow ribbons and purple bracelets all week.
Endofound: What advice would you offer for anyone who might be interested in volunteering with the EduKit?
Chandelis: Think about the magnitude of difference you will make in a person’s life by doing this. If you were a teenager and sitting in the ENPOWR session, what would you want to know? Be open, honest, candid, and compassionate with the students. Let them know that even though their life could be impacted if they have endometriosis, it’s not over and there’s hope.
Teknika: My advice would be “Go for it”. The difference this information will make in the lives of the next generation of young women may be just what we need to find the cause and cure of endo.
If you're interested in volunteering and bringing the Endo EduKit to your hometown, please fill out this application!