Meet Sarah Yvonne Ramos | Endometriosis patient and advocate

We had the good fortune of connecting with Sarah Yvonne Ramos and we’ve shared our conversation below.

Hi Sarah Yvonne, we’d love to hear about how you approach risk and risk-taking.
As an individual living with a chronic illness, I feel as though taking risks is a part of my everyday life. For example, I never know when or what could potentially send me into a painful flare and disrupt my life and so everytime I decide to go somewhere or do a physical activity, I am taking that risk of knowing it could turn out just fine or it could potentially leave me glued to my bed in pain the following day. . Also, in my professional life, it can be risky to let an employer know you live with a systemic disease that has no cure and this cycles back to never knowing what could potentially trigger me into a painful flare and how my employer will handle these situations. So I take these risks in efforts to survive financially and also to do the things I so passionately love, we have to allow some room for joy.
When I decided to start sharing my endometriosis story with the public and participating in patient advocate events, I knew that there was a risk in the vulnerability of sharing my story. I risked being judged, misunderstood, or discriminated against because of my dynamic disability. It is so easy for people to say, “you don’t look or act sick” when my disease is invisible and they have no idea of what I am feeling on the inside.
When I decided to start building an endometriosis community and hosting events out here in Los Angeles, I felt an overwhelming sense of responsibility and some genuine fear that this would completely fail and all of my efforts would be wasted. Not everyone wants to listen to the patient voice, especially providers and key players who determine the guidelines for Endometriosis patient care. I know that with every event, presentation, call, and meet up I am giving my own energy and resources towards my belief in building an inclusive and culturally competent community for endometriosis patients. Without risk taking we have no room growth, stepping out of my comfort zone has been essential in advocating for my own health but also for the greater good of the community.

Let’s talk shop? Tell us more about your career, what can you share with our community?
After being diagnosed with Endometriosis in 2017 via emergency surgery for an ectopic pregnancy, I was shocked to learn how prevalent this disease is and how little education exists for patients. It takes an average of 7-10 to years for a patient receive a diagnosis, there is no cure, and we don’t know what causes it. After being offered ineffective treatment options, I fiercely researched the best treatment option available for Endometriosis and learned about excision surgery. I found a local surgeon who accepted insurance and scheduled a consult. Sadly, my insurance denied my request for coverage and I had to endure a large financial burden just to get access to surgery. In 2018, I had my first excision surgery for endometriosis and have had a total of 2 more to address thoracic endometriosis. As a Latina, endometriosis patient and Los Angeles resident, I saw and experienced first hand the lack of education, resources, support, and awareness for patients here in LA and decided to turn my pain into purpose by creating “Chism-Endo” a social circle and platform decided to providing a safe and inclusive space for endometriosis patients. Chism-Endo hosts in person and virtual support groups as well as local community events for patients both in English and Spanish. I have since partnered with another Endometriosis patient and co-founded Latinas Con Endo which we hope to have as an established non-profit by next year. The biggest challenge has been balancing my energy and resources. As a chronically ill patient it is exhausting to be doing it all but I am so proud to be building community and creating awareness about Endometriosis here in Los Angeles. I am particularly proud of my work with Los Angeles city councilmembers to pass a resolution acknowledging March as Endometriosis awareness month and lighting up city hall yellow in solidarity with Endometriosis patients all over the world. My biggest accomplishment to date is our most recent bilingual, free, endometriosis awareness event that we hosted in a October in partnership with Cal State LA and the Jackson Laboratory to connect patients, providers, and local stakeholders for an evening of education and discussion surrounding the current of endometriosis care in Los Angeles and how lack of access impacts marginalized communities. This was the first event of it’s kind in Los Angeles and I am so proud to have led the efforts to make it happen. I truly believe when our most vulnerable communities win, we all win and so I will continue to pursue education and action for Endometriosis patients here in LA.

Any places to eat or things to do that you can share with our readers? If they have a friend visiting town, what are some spots they could take them to?
Well I am a Chicana living in East Los and there is no shortage of amazing pop up taco spots in my neighborhood so that would definitely be a must for anyone visiting! I’d definitely take my friends into the Arts District for some coffee at Verve Roasters or to Boyle Heights for coffee at Picaresa Barra de Cafe. I’m a surfer so I love taking people to local beaches for some sunshine and surfing. Followed with lunch at a local Mariscos spot for some ceviche, I can’t pick one but Mariscos 4 Vientos always hits! Showing friends the different neighborhoods in LA is always fun, there are always pop up markets and events in Echo Park, Downtown, and Silverlake. I’m also a salsa dancer and every Sunday there is open salsa dancing on 3rd street promenade in Santa Monica which is a really fun vibe!

The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?
I have to give a shout out to individuals in our Chism-Endo community. I built this community as a space to bring endometriosis patients together and we have blossomed into a diverse group of patients, family members, friends, and professionals, working to bring endometriosis education and support to all communities in Los Angeles. My own family members, partner, and friends have also been supportive of my advocacy and actively push me to dream big and keep doing the work that is needed. Lastly, I’d like to shout out my fellow endometriosis advocates, Nathali Zamora of endocipota, Kate Boyce of endogirlsblog, Heather Guidone of the Center for Endometriosis care, and Lauren Bradely from the Jackson Labortatory for amplifying my patient voice.

Website: https://Sickerthanyouraverage.squarespace.com

Instagram: Sicker._than._your._average

Linkedin: http://linkedin.com/in/sickerthanyouraverageendo

Other: Link tree: https://linktr.ee/sarahyvonneramos?utm_source=linktree_profile_share&ltsid=3cc41104-78c3-44e9-a67a-f11cc9bce6b4