Friday, August 26, 2022

Advocates Making a Difference

This week three women showed us all how to be advocates. One woman had her article published in a medical journal and two others shared their stories during a Facebook Live presentation. It makes me so happy to see ovarian cancer advocates highlight their experience in ways not available when I was first diagnosed.

Christine "Cissy" White, an ovarian cancer survivor has participated in a number of #gyncsm chats and is an active ovarian cancer advocate on Twitter and other social media platforms. She was diagnosed in 2019 and wrote the Clinical Trial Treatment Train for the NEJM's Evidence Patient Platform. It was published on August 23, 2022.  https://evidence.nejm.org/doi/10.1056/EVIDpp2200198

The article is an honest look at what it is like participating in a clinical trial. Cissy took part in the ATHENA trial and a trial of REGN4018 alone or in combo with Cemiplimab. She faces decisions many women diagnosed with recurrent ovarian cancer face daily.  Those who conduct and design trials should read and consider experiences like hers when working with patients.

Ovarian cancer survivors and advocates, Kimberly D. Richardson and Kimberly Simmons Emory share their stories and experience with cancer in a Foundation for Women's Cancer Facebook/ Zoom discussion with gynecologic oncologist Dineo Khabele. Dr Khabele joined the #gyncsm community in 2021 to chat about Disparities in Gyn Cancer Diagnosis and Treatment.  Kimberly Richardson, a 10 year survivor,  joined the #gyncsm community in 2020 and shared how to Read a Scientific Poster. I met Kimberly Emory, a 16 year survivor, in 2017 during a Patient Leadership Council meeting in Dallas in 2017. 

You may watch  How to Be Your Best Self-Advocate at https://www.facebook.com/100064784164039/videos/1469632956884193. Take the time to listen to this discussion which includes symptom awareness, communication with your health care provider, genetic testing,  risk, etc.  What can we do raise awareness of ovarian cancer and offer support to women of color?

Thank you Cissy and the "Kim Squared " for everything you do to raise awareness and support women diagnosed with ovarian cancer. 

Dee 

Every Day is a Blessing!

No comments: