Jennifer Zanni founded the Endometriosis Foundation of Rhode Island after being diagnosed with the condition in 2010 and finding a lack of available resources to help her navigate what the gynecological condition that affects an estimated 6 to 10 percent of women and can cause chronic pain and infertility would mean for her.
The Rhode Island State House on March 11 will be lit yellow to support endometriosis month. The Rhode Island chapter of the nonprofit organization is working to increase awareness and contribute to research initiatives.
PBN: You have said that being diagnosed with endometriosis was devastating to you because you want to have children. Has the process of exposing yourself in promoting the foundation been therapeutic?
ZANNI: Absolutely. At first I really didn’t want to talk about it. “Why me?” is all I could think. As I started to talk more with different people I realized I wasn’t alone and it felt like a weight had been lifted off my shoulders. The women I’ve talked to have told me they felt the same way and feel they can talk to me about what’s going on with them. I’ve not only helped myself but I’ve helped others feel comfortable to talk about it also.
PBN: What is your goal for the foundation?
ZANNI: To create as much awareness as possible. The funds raised will be donated to the Boston Center for Endometriosis, which is a research facility looking for a different way to detect the disease and ultimately find a cure.
PBN: Was there support available to you in Rhode Island?
ZANNI: Honestly, when I was diagnosed I asked if I had cancer. I never heard of endometriosis. As soon as I came home from the hospital I started researching online. Everything pointed to infertility, which of course scared me. I started to look for foundations or support groups in the area and couldn’t find anything. That’s when I decided I needed to start a foundation in Rhode Island.
PBN: What might people be most surprised to learn about endometriosis?
ZANNI: I would say the most surprising element is not knowing you have it. I lived with awful, painful cramps since the age of 14 and was always told it was “normal.” It’s not normal to be in that much pain. To date the disease can only be detected by having surgery.
PBN: How do you feel the state’s health care system and workers could better advance awareness of the disease?
ZANNI: When I was diagnosed I wanted to freeze my eggs. I had done some research and thought it was the right thing to do. When I called my health care provider I was told nothing was covered. I paid close to $1,000 for all the doctor visits and testing out of pocket. And I felt as though this wasn’t a choice. I felt like I didn’t have any other options or support being single. If I was married, my treatments would have been covered. It was very frustrating. I feel it is important to get it out there. I do think one way [to help] would be to run a support group. It would help a lot of people and that is something I am working toward to bring to this state and I’ve reached out to Women & Infants to help.