Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
I'm so glad to have been able to speak with many of you over the past 24 hours, or if you're a speaker over the past couple of months. Um, it's truly been an honor to help organize this conference. I've witnessed moments of profound connection of support, of realization. It's my hope that Endo found can be a bridge to connect and strengthen those interpersonal ties. And so the foundation for an ongoing network of support, I've been thinking a lot about our collective efficacy, our combined ability to enact the change We want to see the change that we need and the change that this community deserves. I started at Endo, found in October to build out and relaunch our Empower Project, the Nation's Only School and community-based youth education program for endometriosis. I've had the opportunity to speak with potential Endo Empower volunteers to read form submissions that come in into Endo found.
Um, and one thing that I hear most often is that I, you know, people say to me, I wish that I had this information when I was younger. I wish that somebody had told me when I was struggling as a teenager that I wasn't alone, that what I was experiencing wasn't normal, and that I have options, that I have support. And maybe that maybe they say that their experience would've been different. So for something as prevalent as endometriosis, the TAVR 10 year delay to diagnosis is frankly baffling. I have little words to describe how egregious I find it, um, but that's why we're so committed to this education program. The Empowered Project is a means of demonstrating our collective efficacy, our ability to organize, to build out the resources representative of this community and their experiences, and to harness the power of our personal stories to resonate with teens, including letting those who are going through similar things in the classroom know that they're not alone. And with that said, it's my pleasure to introduce or reintroduce the Empower Project and our Face character, Maya.
So let's just quickly walk through some of the program objectives. Our first objective is to improve knowledge of endometriosis and menstrual health, including all the general things that you would think someone would need to know. And these are things around the population, the prevalence, the signs, and the symptoms, what's normal and what's not normal for menstruation. With lack, with gaps in menstrual health literacy, we often find that people don't know what's normal, what's not normal. And so they, in isolation, a lot of teenagers end up experiencing things that such as severe pain and, um, bowel symptoms around their period without knowing that there are options, that this isn't actually normal and that they have care that they can seek. And so our second objective is to empower students who are experiencing these symptoms to seek care, however that may be, whether that's with their general practitioner and ob gyn a midwife, whatever's accessible to them.
But we want to help them self-assess, to look in words and say, is this happening to me? Are these, my symptoms? Is, are these debilitating period symptoms? Maybe something more. We can't, we can't diagnose people with endometriosis in the classroom, but we can, you know, encourage them to, to get the care that they may need. And so they self-assess. They understand ways that they can seek care for endometriosis and how, and then they feel prepared to speak to a medical provider if applicable. And this does include what to do when you don't feel validated, when you don't feel listened to. When someone dismisses your pain, someone writes it off, and d and you might need to see another provider. And so encouraging them to ask certain questions to know that they can see someone else if they're not feeling listened to.
And our last point is to spread endometriosis awareness. And when we say awareness, right, what does this mean? Um, we want adolescents to feel comfortable talking, more comfortable talking about their period to be talking about these symptoms with their loved ones, about menstrual health and endometriosis. We want them to understand ways that they can support someone who has these symptoms, even if they don't experience endometriosis, even if they don't menstruate. You know, you have people of all dinners in the audience. If they, you know, they might be sitting there and thinking, why am I learning this? Well, they're, they're a friend. They're a, you know, a brother, a sister, they're a partner. Um, and everyone needs to know this information because there's ways that they can support people who are going through this with compassion, with understanding, um, listening and validating. And so that going, going forward, I'd like to show you all something really special.
Um, we've been working on storyboards. We are currently in animation. Um, we, sorry, empower follows Maya's story. Basically as she gets, as she experiences these abnormal period symptoms that sometimes keep her from doing the things that she loves. Her story follows her journey to being diagnosed with endometriosis from its onset around her first period to the final doctor's visit, where she's diagnosed in her twenties. Maya's animated videos are interspersed with explanations by a doctor, but are ultimately meant to reflect the lived experiences of those in the endometriosis community. And so this is a special patient day preview, but, um, we're almost done with the first video animation, but here are some of our storyboards. So she's experiencing these pains. She can't go to school. She has a big event that it's keeping her, it's keeping her in. She doesn't feel like she can really make it. She doesn't feel like she can play, you know, she's a, she's a basketball star. She's on her basketball team. She doesn't feel like she can make it to the game, and she feels like she's letting everyone down and she doesn't have the support that she needs. And we, you know, we cut to scenes where
She sees a doctor, they give recommendations, they tell her she's stressed, they tell her she might have ibs, and she's feeling alone. She's feeling unsupported. And there's these moments of connection between her and her family who keep supporting her, but they don't really understand what's going on. Her mother experienced this pain and other members of their family, but it's normalized. It's, we don't talk about it. And in isolation, things like this thrive. And this is just an aside. If you've ever been told that you need to get pregnant for your, your endometriosis will go away if you get pregnant. We've even included a bit about that. To dis dispel all of these myths that are encountered by the endometriosis community, we want to let them know that if someone ever says this to you, it's not true. And so, you know, when she finally gets diagnosed, you know, she learns that there's support. It's, there's options that she's not crazy, that there's nothing that she's, that she can be listened to and that she, um,
That she's seen and acknowledged. But then what does that mean? And so the subsequent videos go into what does it mean from there? It's, it's a scary thing to be diagnosed, and especially if this is an audience of high school students. Um, so the subsequent videos talk about, you know, what does it mean now? What are we, what, what can you do? Um, and so the series of videos are meant to be all-encompassing. They're interspersed with explanations by a doctor. Um, and they're brought most importantly to schools by endometriosis educators, by our volunteers who've agreed to show these videos and but also share their personal story. What's most important are these personal stories. It's how we connect. It's how we resonate. And without them, you know, we have a couple of videos, that's great, but without our edu, uh, without our volunteer educators, we don't have anything.
We don't have the means by which we can really reach the people who need it. And with that, I'd love to encourage you all to check out the Empower Project, to think about bringing this project to your school, your community, whether that's your alma mater, that's your niece's school, your, um, uh, community center in the town near you. So we'd love for you to get involved. We're running focus groups to get people's feedback, to make tweaks to the animation, to make tweaks to the content. And so we'd love for you to participate. This is my plug <laugh> if I haven't made this plug, you know, 40 times yesterday. But we'd love to have you involved and have this be something that is not only reflective of the endometriosis community's experiences, but something that people can get behind. And without your support, we don't have anything. So going onto, you know, just diverging from The Empowered Project. Speaking of collective advocacy, we reached out to over 10 national endometriosis organizations across the globe, um, to garner support, to foster collaboration, um, and the Endometriosis UK responded with a special video that they made just for our patients symposium. So we'd like to,
Hi, I'm Emma Cox, chief Executive Prevent Mecho uk. What we do here at Endometriosis UK is a bunch of activities to try and help support those with endometriosis and make sure they get a great diagnosis in treatment care. We have a lot of work to do to make that reality. We have a fantastic team of volunteers who are run our helpline support groups, uh, web Chat and Health unlock online forum. Um, and big thank you to all the volunteers. We wouldn't be able to do anything without you. We campaign to raise awareness and to get government to change, uh, and improve care for endometriosis. We try and provide as much information as we can to help people with the diagnosis and treatment journeys. And we support research throughout the UK so that we somehow sometime in the future get the answers we need. Follow a Cure for endometriosis.
Hi, I'm son group support leader Fe Lester. I've been volunteering with Endometriosis UK for six years. It is so rewarding to be part of such a supportive community and to help others navigate through the challenges of living with this disease.
Hi, my name is Jenny and I'm a helpline volunteer with Endometriosis uk. I'm sending all my very best wishes to you in the USA and around the world.
Awesome. Thank you so much, Carolyn, for introducing Maya. We're so excited to have her grand debut here at the, at the Patient Symposium. So if you guys wanna get involved in your hometown and, um, become an Endo educator, we would love that. Please reach out to Carolyn, who will be the back of the room in the lobby all over the place doing what she does so well. So yesterday was a pretty, uh, fantastic 11 hours of programming. I don't know how many of you guys were here for the whole 11 hours, but I see a lot of familiar faces. Thank you guys for coming back. <laugh>, we're not gonna do 11 hours today, but we are gonna have a jam packed day full of hopefully very informative, exciting, educational, inspirational, relatable content. Um, I started off yesterday morning with a wish that, uh, each of you would learn something new, meet someone new, give support, and feel supported by this growing endometriosis community.
Uh, I heard from many people yesterday at our awesome networking social that you were able to make some new relationships in the room, which is very exciting to us. Um, and that maybe you got some new information to help make some tough decisions. We're gonna kind of dive into some of that deep, um, information again today. Some people found some relief to learn that they're not alone in their struggle. I think that that's part of what's special about Patient Day is that you get to come together and, and learn that you're not alone. Um, I know for me that was a huge deal four years ago. I was like, wow, there's other people with the same story. I thought I was an anomaly. Um, we hope that today you find inspiration to get more involved. That is exactly what Patient Day is all about. Um, I'm gonna just, for those of you who were not here yesterday, I'm gonna run through rapid fire what we did.
I believe some, yeah, some photos from yesterday are gonna be up on the, on the board. You've got, um, Dr. Goldstein who gave an, uh, an in-depth overview of what Endo endometriosis is based on what we know today. Dr. Ske then followed, um, by di diving a bit deeper into the subject. Uh, he, you know, did a lot of discussion about why Endo can involve multiple organs. We got to see a little bit of some surgical pictures. If you weren't here and you don't love surgery, he missed out on the blood and guts and hopefully there'll be some more today. Um, but it's interesting, I think, and, uh, <laugh>, Dr. Singer spoke about options for egg freezing for patients with known endo infertility challenges. And then we got to hear so many great patient stories we had, and we will today also have some, some panelists come up and share their personal story.
We got to hear about, you know, patients who have bowel endo and some thoracic cases and some of the, just what we used to think were really unusual, um, aren't that unusual when we all come together and talk about that. So I thought yesterday was pretty fantastic. Um, we got to hear from Rachel Gross yesterday. How many of you were here yesterday? I just wanna like, yeah, what She was awesome. She really brought some humor, history and a fresh perspective on how like we all have come to learn about the female anatomy. Um, even as a physician, I'm like, yeah, she was so right. We really skipped over a lot of things that matter, uh, when I was in med school, but also just how you're taught and how, um, how much historical shame. It wasn't just like family shame. It's like this is deep-rooted in our culture for, you know, hundreds of years and what an enigma the female reproductive system has been.
And I just loved the way that she really peeled back the veil and gave us some new language, right? I was like, right on. I took a lot of pictures and I want those earrings. Um, I digress. Um, we were led through some therapy techniques. That's Sydnee Faith Rose. Just loved that. And, um, you know, we've got contacts for all of these people, um, on, on our website. So if you guys wanna go and learn more about their techniques, you know, we had some incredible teachers here yesterday. Uh, also learning from Daphne Javich, um, health coach and, and just the power of routine, um, and, and what a healthy routine looks like and how to build those for ourselves. We learned about how pelvic floor, physical therapy and acupuncture can relieve many pain symptoms associated with Endo. We learned a lot about sex therapy. So if you guys missed yesterday, it was interesting, right?
And, um, not just what it is and how to utilize it, how to, to access it, but how it can actually bring us deeper connection with our, with ourselves so that we can better connect with an intimate partner. And I thought that was a really great start to some conversations. So today we have another fully packed agenda. We have incredible speakers. Um, uh, just a few reminders here. Um, please go out in the lobby, meet with our sponsors. We have a few new faces out there today. Generation Next is in the house. You go talk to Javi and learn all about them. They are an important sponsor for, for our event, um, and a new sponsor for us this year. Um, my event, Pfizer has a table and, uh, endo toolkit that's really pretty great and you can take a copy of it. Um, just, you know, so often people wonder why we have like a drug rep company, you know, in, in the house. This is a collaborative or, um, relationship with this company. They've come together with, um, experts, a across the Endo community to give really good, really well balanced information. So take a toolkit, get some information. There's a lot of ways also to get involved and share information. Um, and, uh, they've got a booth set up today. Uh, the other thing I wanted to say, oh yes. If you're on social media at all today, tag firstname.lastname@example.org.