WHY ANOTHER COMMUNITY FOR WOMEN WITH OVARIAN CANCER?
If you are someone whose life has been affected by ovarian cancer you are likely asking yourself: “Why another community for women with ovarian cancer?” There are already several support and advocacy groups and numerous forums on social media where women share their experiences, ask questions and receive emotional support. So, it makes sense to ask: “Why should I participate in another one?”
As a woman who has been treated for ovarian cancer herself, let me try to answer this. If you know me, you know of my desire for the “Teal Army” to speak with a united voice. I have always been frustrated by the fact that although ovarian cancer is a relatively rare disease, our community is fragmented and it’s been hard for us to come together easily. I have wondered how is it that communities representing cancers that affect many more thousands of individuals can come together as one so much more easily than ours? Is it because ovarian cancer is rare, or we are spread across the United States and the globe? Is it because we are in survival mode and that our priorities are to find the closest most accessible support? No matter the reason, I think we should be there for each other and we should all support research into ovarian cancer.
When I was first diagnosed, I looked close to home for other women who had walked the same path. When I could not find them I took to the internet. Search engines took me to pages filled with dire statistics and scary treatments. In a time before Facebook (yes, I really was diagnosed 21 years ago and Facebook came on the scene a mere 14 years ago), there was little to be found that would lead to the support I so desperately needed. It was only over the next 10 years that I began to learn of a larger community of women like me connecting with two national groups and meeting women from across the world. We realized we all want the same things – connection with others on the same journey and answers to this disease.
Frequently I have carried the patient’s voice to the table as a patient advocate serving on various research projects and review panels. Those doing the research have questions that only patients can answer. What are our experiences with the disease and treatments, what are our priorities when formulating research questions, what would entice us to enroll in a clinical trial, and many more.
When I heard of this effort to grow an ovarian cancer community in support of the global effort to end women’s cancers by Globe-athon and specifically, the Ovarian Cancer Registry, I knew this could be a key step in connecting us. Just think, you have the opportunity to share your data, participate in data collection, and be part of new studies. You will be a participant in a living growing community that will bring us together in a new way supporting each other and research. I hope you will consider adding your voice to the conversation. Together we are teal strong.
Globe-athon is proud to partner with Smart Patients, an online community where patients learn from each other about their cancer journeys. On Smart Patients, you can discuss issues raised in this blog post and beyond. Join here: https://www.
