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Forging a Path: Noa’s Journey with Tightlipped to Create Space for Women’s Health Advocacy

Forging a Path: Noa’s Journey with Tightlipped to Create Space for Women’s Health Advocacy

Welcome to this episode, where we delve into a topic close to the hearts of many yet often veiled in silence – pelvic pain and vulvovaginal disorders. Have you ever found yourself grappling with these issues, feeling isolated in your struggle?

Today we’re going to shine a light on the incredible work of Noa, the driving force behind Tightlipped, a patient-led advocacy group dedicated to reshaping the narrative and care surrounding women’s health.

Together, we’ll embark on a journey through Noa’s own experience with pelvic floor dysfunction, a journey that propelled her to transform Tightlipped from a mere storytelling platform into a powerhouse advocating for change in healthcare. We’ll uncover the alarming gaps in OBGYN education when it comes to these conditions, the pervasive stigma that patients endure, and the pivotal role Tightlipped plays in advocating for essential curriculum changes for proper diagnosis and treatment.

We’ll confront head-on the systemic challenges within our healthcare system – from the dismissal of symptoms to the glaring disparities in patient access and treatment options. 

We’ll dissect the barriers posed by insurance and coding practices, underscoring the urgency of listening, educating, and taking swift action for early diagnosis and effective management.

Of course, let’s rephrase that:

This episode isn’t just about insights; it’s a call to action for a more inclusive and informed healthcare landscape.

Get in touch with Noa:

Website

Instagram

Get in Touch with Dr. Rahman:

Practice

GynoGirl Website

Instagram

Youtube

Transcript

Dr. Sameena Rahman [00:00:01]:

Hey, y'all. It's Dr. Samina Ramon Gynogirl. I'm a board certified gynecologist, a clinical assistant professor of OBGYN at Northwestern Feinberg School of Medicine, and owner of a private practice for almost a decade that specializes in menopause and sexual medicine. I'm a south asian american muslim woman who is here to empower, educate, and help you advocate for health issues that have been stigmatized, shamed, and perhaps even prevented you from living your best life. I'm better than your best girlfriend and more open than most of your doctors. I'm here to educate so you can advocate. Welcome to Gynogirl presents sex, drugs and hormones.

Noa from tightlipped [00:00:47]:

Let's go.

Dr. Sameena Rahman [00:00:50]:

I'm so excited to tell you about a podcast I just finished with Noah Flyshacker from tightlipped.org. Tightlipped is a grassroots organization, a nonprofit that was created by patient advocates with pelvic pain and vulval vaginal disorders. She is the executive director of this organization. We talk about how, as a patient, she came to her diagnoses of vestibulodynia, which is pain in the vestibule, which is the opening of the vagina tissue around the opening in between the inner labia menorah and the hymen remnant, and that area that can cause so much discomfort and pain for patients, which I will definitely talk to others about. And she did a great job telling us how she decided to create a forum for patient and patient advocacy. Tightlift is a nonprofit. They are an organization that is patient run and we have medical providers that are associated with it. I'll be helping with tightlift in the future, and also they look at the stigmas around some of these conditions.

Dr. Sameena Rahman [00:02:00]:

They're working on educating medical providers about these conditions, especially in OBGYN residencies. They've launched a few programs and they're also working on policy on a national level to change policy for women's health research and advocate for more research in this particular area, as well as the systemic problems within the medical system that prohibit patient access. So she's going to talk about all of that, which is wonderful, and it was a great time speaking to her. So I hope you enjoy this podcast. Thanks. Hey y'all, it's me, Dr. Smeena Raman Gynogirl. I'm so excited today to have Noah Fleischacker from tightlipped.

Dr. Sameena Rahman [00:02:41]:

Tight lipped is a grassroots organization that is totally patient run and based on patient advocacy for issues around pelvic pain and vulvar vaginal disorders. My line here is I'm here to educate so you can advocate. And what better way to advocate than form a whole movement around it, which is amazing. So I'm going to let Noah talk to us about who she is. She's the executive director at Tightlip. So she's going to tell us a little bit about that, how tightlip evolved, and then we're going to even dive into her own story, because, again, this is a patient advocacy group built on patient stories and issues that patients have experienced within the medical community when it comes to their pelvic pain and vocal vaginal disorders. So, Noah, so much for being on my podcast.

Noa from tightlipped [00:03:27]:

Great. I'm so happy to be here. It's great to talk to you.

Dr. Sameena Rahman [00:03:30]:

You as well.

Noa from tightlipped [00:03:31]:

So, yeah, tell us.

Dr. Sameena Rahman [00:03:33]:

Tell us how tight lip came to then. You know, I would love to. The listeners, of course, are going to want to know your story as well.

Noa from tightlipped [00:03:40]:

Yeah, definitely. So, like you said, I'm Noah. I'm the executive director of Tight Lipped, which is a patient led advocacy organization doing grassroots organizing work so that people with vulvo vaginal and pelvic pain can get the care that they need. And I come to this work as a patient. I have pelvic floor dysfunction, chronic vulvo vaginal and pelvic pain. And my background is in community and political organizing. And so big part of what motivated me to start this organization and now to be doing this full time is feeling like there really was very little, if any, grassroots organizing work activism related to fighting for people with these conditions. And yet so many people who have these conditions struggle to get the care that they need and face obstacle after obstacle when trying to get a diagnosis, trying to get treatment, and also just the barriers of social stigma, medical stigma related to these conditions.

Noa from tightlipped [00:04:35]:

And so that's kind of where tightlip came from. And happy to talk more about kind of our origin story and what we're doing now.

Dr. Sameena Rahman [00:04:42]:

Yeah, I mean, we'd love to hear, like, I'm sure you came up with this idea. It sounds like you're an entrepreneur from the get go, and then can let us know, did you talk to other people, the other patients came to you? How did it evolve?

Noa from tightlipped [00:04:55]:

Yeah. So as far as I can remember, I've always had pain with tampons, sex, pelvic exams, pap sneers. That's been something that I don't even really know when it started. It's just always been a part of my life. And also, as I got older, I started developing other symptoms of pelvic floor dysfunction, urinary issues, that kind of thing. But it always felt like something that I had to keep secret. Like, for a while, I just thought, this is really weird. Maybe this is just something I'm experiencing.

Noa from tightlipped [00:05:25]:

I had never heard of other people who've had those kind of symptoms. I didn't see it in the movies, on tv. I hadn't heard about that as a real medical condition that people experience. And so for a long time, I just did not talk to anyone about it. And it wasn't until I started going to the doctor and trying to find out what was going on and trying to get a diagnosis that I slowly started opening up to other people in my life and discovering that this was actually a super common experience and that I had people who were not strangers, who were, like, my best friend from elementary school, my college roommate, like, people who were very close to me, who also had been dealing with basically the same or similar symptoms for years and keeping it secret.

Dr. Sameena Rahman [00:06:09]:

Yeah. And I think that's one of the biggest issues, is that there's so much shame and stigma around the idea that something is wrong with you down there. We can't even say the words right because we're always like, something's happening down there. It's one of the biggest inhibitory steps for patients to kind of like, okay, first you have to acknowledge that it's a problem because most patients think they're way out on left field with this. Maybe no one else suffers in the world, which we know how common some of these conditions are. And then the next step is always, like, coming to terms with, this is something I need to find help for, and then it's trying to find the help.

Noa from tightlipped [00:06:45]:

Right.

Dr. Sameena Rahman [00:06:46]:

Which is another obstacle. So tell us when you had your most patients tell me about an epiphany moment that they had. Like, this is something I need to fix. Like, I shouldn't hold that much shame and stigma around it anymore. Do you have one of those that you can remember?

Noa from tightlipped [00:06:58]:

When I had gone in for pap smears or pelvic exams in the past, it was too painful. I wasn't able to tolerate the exam. And so I had a gynecologist who told me she prescribed sedatives and told me to take the sedatives and come back in and I'd be able to get the pap smear. And this is Xanax or a volume.

Dr. Sameena Rahman [00:07:17]:

Or something like that.

Noa from tightlipped [00:07:18]:

Yeah, it was something like that. And so I did that, and I went in and I didn't tell people. I was doing this. I thought, okay, I'll finally be able to get my pap smear and move on with my life. And this was in 2017. So the journey started seven years ago. Yeah. I had already experienced symptoms for a long time, but also at that time, there were a few different things that led to me being like, okay, I'm going to go finally get my pap smear.

Noa from tightlipped [00:07:47]:

But part of it was also that I kept trying to have penetrative sex with my partner and was experiencing just, like, excruciating pain. A lot of people describe this feeling of a wall or, like, this is just impossible. And that's definitely what it was feeling like for me. And I didn't have any idea what that could be or why that would be happening, right. So I went in, I took the sedatives. A friend drove me there because I couldn't drive myself home. And this gynecologist, she tried to do an exam, and I was in so much pain, I could not tolerate the exam. I was maybe emotionally in a better place than I had been before because of the sedatives.

Noa from tightlipped [00:08:30]:

Like, I was maybe calmer, but I jerked back in pain. I couldn't tolerate it. And the gynecologist, her response was, oh, you must not have taken enough of the sedatives. We need to put you under general anesthesia in order to get your pap smear. And she didn't entertain the idea that there was something actually wrong. She was like, you're just really nervous about your pelvic exam. So after that, I was like, okay, I guess that's what I need to do. And that point, I still kind of blamed myself for this whole experience.

Noa from tightlipped [00:09:02]:

At the time, I thought, like, wow, why am I so nervous about my pelvic exam? I need to just get over myself and get the exam done. I still didn't know there was a legitimate medical condition that could be causing that kind of pain. And so I took the day off work, went to the hospital. I felt a little bit ridiculous when they were putting in the iv, and they're like, are you getting surgery? What's going on? I was like, no, I'm getting a pap smear. So I did that. I went under anesthesia, and when I woke up, the gynecologist who did the pap smear, she was like, great job. You got your pap smear. I'll see you next year.

Noa from tightlipped [00:09:37]:

And she left. And there was no conversation of what other symptoms I couldn't use tampons. I was in so much pain from even a Qtip, but there was no conversation about what is causing this and what's going on. It was just like, now you finally got your pap smear, you're done.

Dr. Sameena Rahman [00:09:57]:

Yeah. Which is for the providers that are listening, there's a big tendency to push the narrative that people need pap smears. And they do, obviously, but not at the expense of patient. Such distress. I always tell patients, like, if this is going to be a big problem for you, the chance of you having a really aggressive hpv that you get from external contact is possibly there, but obviously, you haven't had full on penetrative sex. And so it may not be that HPV is the biggest issue right now. Right. HPV is not the biggest issue.

Dr. Sameena Rahman [00:10:36]:

It is. Why is this happening to you? And let's get an investigation. My colleague and friend, Dr. Rachel Rubin, always says that in sexual medicine, we're like sex detectives. Right. We have to actually get to the root cause of the problem. And I just feel like with the lack of training and the way the medical system works, where you just don't have time to talk to a patient about their evolution of symptoms, that we have too many barriers for patients, which is why what you're doing is so amazing.

Noa from tightlipped [00:11:05]:

Yeah. And I totally agree. I think at the end of the day, I'm glad I got my pap smear. I don't think it was a mistake, necessarily. And I think it was good in some ways, even though it was not so not great to have to go under anesthesia. I think it was good that that's what I ended up doing. I think the issue was that there was no conversation or investigation about what's causing this level of pain. Because if it really was just, like, anxiety, I mean, even if it was just anxiety, there's something else going on there when I have all these other symptoms.

Dr. Sameena Rahman [00:11:38]:

Absolutely.

Noa from tightlipped [00:11:39]:

And so that's where I really feel like, looking back at that experience, that was a major issue to me that she didn't say, here's a list of the potential conditions. Let's figure out which of them it is. Let's do a qtip test. Let's do all the different kind of diagnostics. Exactly.

Dr. Sameena Rahman [00:12:00]:

And so after that, what was your next sort of. Because obviously, you still weren't able to have penetrative sex because there was no real evaluation in terms of what was happening. How did you go about seeking the care that you needed?

Noa from tightlipped [00:12:13]:

I ended up going back to my primary care physician, who was able to get me a referral to another doctor. And then I found my way to pelvic floor physical therapy through that. But it was a lot of kind of trial and error, of going to different doctors, kind of trying to figure this out on my own. I think the issue, and this comes back to the issue with this particular gynecologist, who I saw, is that there wasn't someone who was like, okay, we're going to run this investigation and figure it out. It was a lot of me kind of like, okay, should I go to this person? What are they saying? Should I try this? And a lot of kind of trial and error without any real conversation about still trying to figure out what's going on here and what could be causing it. But what that did do for me was open up this conversation about actually talking to people in my life about what I was going through. Up until that point, I had not talked about it. And I started to get more and more frustrated with the health care that I was getting, as I felt like it was 100% my responsibility to learn everything I could about these conditions, try to self diagnose, try to self refer.

Noa from tightlipped [00:13:20]:

And so what changed for me at that point was that I started talking much more openly with people in my life and discovering huge numbers of people who were dealing with the same thing. I even found out I had a friend who was going to the same pelvic floor physical therapist as me, and we had no idea that we were both dealing with this.

Dr. Sameena Rahman [00:13:38]:

Oh, that's great. At least starting the conversation is half the battle, because then you can realize that it is common. It's not normal, but it's common, and you feel less ostracized or less like, what's wrong with me? Like, there's something wrong with me. Right. I think that's for any of us that have gone through any of these conditions, it's always like, wait, there's something wrong with me, right? This is not something that's so common. And then you realize it is, and it reassures you, and it actually gives you a little bit of hope that there's some stuff that can be done.

Noa from tightlipped [00:14:07]:

Yeah. And one of the things that changed there, too, was it helped me understand that this was a broader systemic problem and not just the problem of, like, oh, this is my fault that I can't find the care that I need, or this is my fault that I wasn't able to get a diagnosis, or I just happened to see the wrong doctor. I think what I started to understand as I went through my own medical journey was there's actually a much deeper systemic problem here where medical providers, in particular obgyns, but also other providers, aren't receiving education and training on these conditions. And so then when patients show up in their offices with these symptoms, they're not prepared to treat them, and patients aren't sure where else to go, because that's your go to person for all things. Vagina is your Obgyn. And if they don't know how to diagnose and assess you for vulvo vaginal pain, then it's hard to know what you should do or where you should turn.

Dr. Sameena Rahman [00:15:02]:

Absolutely. And I think that goes to a lot of what tight lipped is doing, as you're leading the way for tight lipped to not only educate listeners and patients through your podcast and your educational webinars and other things that you're doing, but tell us about this model that you're creating at different medical residencies, or OBGYN residencies, for trying to integrate a systemic approach to increasing education among OBGYN residents.

Noa from tightlipped [00:15:33]:

Yeah. So last year, we launched tight lips advocacy work and community organizing work. When we initially started tightlip, it started as a storytelling platform and storytelling organization. And then we started hearing basically thousands of the exact same story. And the story was something along the lines of, I have vulvovaginal pain, pelvic pain, urinary issues, pelvic floor dysfunction. I've gone to x number of doctors over decades for some people and haven't been able to get the care that I need. And that was like the story of anyone. People were writing in these paragraphs telling us their experiences, and we realized this is a much bigger issue.

Noa from tightlipped [00:16:16]:

And we don't just want to be a platform for these stories. We also want to actually bring people together to fundamentally change how patients are experiencing the healthcare system. And so last year, we launched our first grassroots campaign, which is focused on closing the gaps in Ob GYN education. And so he felt like a huge issue is this lack of training. It's not any particular OBGYN's fault that they don't know how to treat vestibulodymia if you didn't receive that training in residency, even know what the vestibule, right? Where's the vestibule? What is this thing? Right? That's not any one person's fault. It's a much bigger issue of, why is this not a standard part of mandatory curriculum and educational requirements for obgyns across the country? So we launched this campaign that is focused on ensuring that every ob GYN in the United States learns how to diagnose and treat all sorts of vulvo, vaginal and pelvic pain. And we're talking about really common conditions, right? Like vulvody vestibulodynia, pelvic floor dysfunction, lichen sclerosis, like conditions that cause people chronic pain and that are just falling through the cracks when it comes to education and training. And so we launched a campaign first in New Haven at Yale, and we've now established a couple of chapters across the country and started to work in collaboration between patients and faculty and residents at different teaching hospitals to incorporate this into OBGYN residency programs.

Dr. Sameena Rahman [00:17:40]:

That's amazing, and I think that's a great first step. First step is always to educate, and then the next step is to actually see patients with it. Right? Because I feel like so many people graduate not even knowing if it's menopause. They don't know how to treat menopause. If it's sexual dysfunction, sexual pain, the only go to was always pelvic floor therapy. There was no additional investigation, at least when I graduated a lifetime ago. And these vulvar dermatoses, like lichen sclerosis, lichen planets, which cause significant amount of distress for patients across the board, whether or not it's the vulvar itching or the vulvar pain or the sexual pain or the clitoral adhesions that you get, all of these things, which we'll talk about some point in the podcast, had such a significant impact on most patients because the vulva is very much ignored on exams. The clitoris is very much ignored on exams.

Dr. Sameena Rahman [00:18:35]:

And the vestibule, which, for the listeners who don't know, is the area from the inner labia menorah to your hymen remnant, from the urethra down to perineum. So a layer of tissue that's within that inner labianor, and the entry of the vagina that causes so much significant distress for such a small amount of tissue, it's like, significant distress for most patients, and it's just so very important for patients, even if someone graduates and not able to know how to treat it per se, but at least can say, okay, you need to see this type of specialist, or maybe you should see this person. Some clinicians graduate, they don't even know. Like, I don't even know where to start with this. So I think every little step to change it from a systemic level is going to be really an amazing accomplishment and helpful for patients to come.

Noa from tightlipped [00:19:23]:

Yeah. And that's such an important point that we don't have the expectation that every OBGYN becomes a specialist in these conditions and knows all the complexities of treating these different conditions. It's more, how do we make sure that people have the baseline information so that they can direct people to first line treatments, give them their initial referral to pelvic floor pt or hormonal treatment or whatever it is that they need, and then get a referral to a specialist if that's ultimately what they need. Because I think the main story that unfortunately, we hear over and over is people having their symptoms dismissed as psychological and the harm that that can cause. I mean, I can't tell you the number of people who I've talked to who were told, oh, you have pain with sex, just drink a glass of wine. And then people who were told that at a very young age and then ended up, I have a lot of.

Dr. Sameena Rahman [00:20:15]:

Patients who don't drink, who are like, yeah, they told me just to have some alcohol.

Noa from tightlipped [00:20:19]:

Yeah, and it's so harmful. Yeah, and scary. And then also, especially if you're not a privileged patient who's able to go seek out ten more opinions, that might be the first and last time that you bring that up with a gynecologist, and then you put up with your symptoms for years after. And by the time you actually get treatment, if you do, your condition is way more complex. And I think that's true of. I mean, that's certainly. I see that as my own experience, but also other people's experiences, where if we had been diagnosed and treated from day one, right, maybe in high school or in your early twenty s, it would have been a much simpler and more straightforward process.

Dr. Sameena Rahman [00:20:59]:

Absolutely. And I think catching it early, can we know that over time, your nerves talk to each other and you can get centralized pain disorders, which are exceedingly hard to treat. When your brain is now like, okay, this is the pain you're going to feel all the time, because now all the nerve endings are hypersensitized and everything, it just gets harder and harder to treat and takes longer and longer to get better. So I think one of the first patients I spoke to on the podcast told her story about significant vaginismus and how ultimately, the lack of treatment led to her even having a divorce and other things because she couldn't even have a consummated marriage. So I think that these kind of things, when left untreated over time, can just actually worsen someone's quality of life and be a big deterrent for them overall.

Noa from tightlipped [00:21:50]:

Yeah, definitely and I think also part of what you're getting at can be related. There's huge equity issues with how people experience these conditions, just in terms of the people. And we find this with the people who are finding tight lipped are often the most privileged patients because they've gone to so many doctors and so many people who don't take insurance that they've actually been able to get a diagnosis and to get treated, which means that most of the people who are getting diagnosed are white, are wealthier patients, are patients who have really good insurance, and then for patients who don't have access to that kind of is. This is a big part of why we decide to focus on OBGYN education first, because at least in the US, most people who have, anyone who has insurance who has a vulva can see an oBGYN as your well woman appointment. And so you have access. Most people and anyone who has insurance has access to a regular OBGYN appointment, but most people don't have access to specialists or to go see someone who's out of network or to take off work and go to seven different doctors. And so there's a huge, huge gap in just who's getting diagnosed and treated with these conditions.

Dr. Sameena Rahman [00:23:08]:

Absolutely. And I think it speaks also to a bigger problem in the medical system, which is around insurance reimbursement for sexual dysfunction, vulgar vaginal disease, or much related to women's health, actually, when compared to other specialties. And I think that that is why so many of my colleagues have had to go out know, because they're trying to maintain Overhead, trying to do things for patients that are maybe off label because the FDA hasn't approved x or y for know. And I think that speaks to a bigger problem, is that insurances don't even consider a valid, you know what I'm saying? Like a condition that they should reimburse or can't even code it the right way so that you can get reimbursed for certain procedures and that kind of thing.

Noa from tightlipped [00:23:52]:

Yeah. So when we started tight lipped, we identified four key issues, or four core categories of problems. The first was stigma and social attitudes towards these conditions and the way that that gets in the way of people's experiences of getting medical care. So first was stigma. The second was lack of medical education, knowledge and difficulty finding a provider. The third one was lack of research on effective treatment options and gaps in research and clinical trials. And then the last one was maybe the biggest one, which was gaps in access and insurance coverage and insurance not covering all sorts of pelvic floor Pt and any of the procedures and all that kind of thing. And so we really decided we're going to launch tightlift as an advocacy organization to address all four of these issues and chose, the first one we chose is OBGYN education and training, both because it felt like the one that was actually possible for us to start with.

Noa from tightlipped [00:24:52]:

I think working to change insurance is such an enormous, enormous. I mean, all of these are enormous problems, but that one can't figure it out.

Dr. Sameena Rahman [00:25:01]:

It's hard.

Noa from tightlipped [00:25:02]:

Yeah. We were like, we're going to get to that next. But also because of this access issue, if you don't have providers who are educated on these conditions, then it's very hard to address any of the other. These things are all tied to each other and these are all big kind of systemic problems. But ultimately, we want tightlip to grow to a point where we are addressing all four of these issues. And that we decided our first grassroots campaign would focus on OBGYN education. That would make it easier to then take on the other issues later on.

Dr. Sameena Rahman [00:25:32]:

That's wonderful. And I think there was the White House initiative for expanding women's health research. Can talk about how tightlip, I know myself and many of my colleagues signed the letter that you guys had written, so you can talk about that a little bit, too, if you'd like to talk about how from a national level, the advocacy, politically you're trying to do.

Noa from tightlipped [00:25:55]:

Yeah. So a couple of weeks ago in November, the White House announced this new initiative that's federal funding for women's health research, in particular, women's health research on conditions and issues that have historically been understudied, underfunded, which is so much of women's health. But we know that that's many, many conditions that have long been misunderstood, and it's because of a lack of a gap in research and knowledge. And when we saw this announcement was both. That's amazing and very exciting because there's such a dire need for that research. And also, Volvo vaginal and pelvic pain conditions were not listed within the research priorities, and they were taking some input on what should be included. And part of why we decided we wanted to take this on as just tight lipped, put together a letter from medical providers and a letter from patients. And part of that is because we know that these conditions are so, so common.

Noa from tightlipped [00:26:53]:

Like one in four women, one in four people with vulvas in the United States experiencing chronic pelvic pain, chronic vulvo vaginal pain, and so super common and like we've already talked about has a huge impact on people's day to day life, people's quality of life and daily functioning and ability to participate in relationships, in school, work, all sorts of things. And so we put together a letter. The first letter was from medical providers. Over 380 medical providers signed on who are providers who focus on treating these conditions, who are obgyNs, nurse practitioners, therapists, urologists, et cetera. And then we also put together a letter from patients, which we got over 800 patients signed onto the letter. And what was really moving to me was to see how many patients signed on identifying themselves with their diagnosis, because I think for such a stigmatized condition. And we got 800 signatures within, like, three days. If we kept doing this, I think we would be easily in the thousands by now.

Noa from tightlipped [00:28:00]:

But we were like, we want to get this into the White House initiative before, while they're still taking feedback. And we actually put together a document of testimonies because the majority of those patients, not only did they sign on to the letter, they also submitted a testimony voluntarily saying why this research is important and how it will impact their lives. And we have now a 30 page document of testimonies from patients around the country. And it's very powerful to see how people just understand the direct connection between. If there was better research and more research funding, it would drastically improve their lives and enable them to participate in society in a way that they aren't currently able to.

Dr. Sameena Rahman [00:28:48]:

Yeah, now that's amazing. 800 plus the testimonials. I'm sure the themes are so common, though, that you're reading about. Why is everyone telling every patient to drink wine and. Yeah, that's very much a common theme. Unfortunately, it's not funny.

Noa from tightlipped [00:29:04]:

Yeah, I know. Well, that's great.

Dr. Sameena Rahman [00:29:06]:

And I think that the steps that you guys are taking in the next few steps are going to really make a dramatic impact on the whole country and all the people with Volvo's that are really suffering out there. How big is the organization now? Tell us about your board and how many patient advocates you have on board and all that stuff.

Noa from tightlipped [00:29:27]:

Yeah, so tight left is almost entirely volunteer led. We are growing extremely quickly, and so a lot of our work is run by volunteers who have launched and established chapters in their local cities. So we currently have four chapters, and we're going to be growing to seven chapters within the next couple of months. And each of our chapters has volunteers who are patients themselves. Almost everyone involved in our chapters is someone with a whole range of different conditions. But one of these conditions who's motivated by their own personal experiences. And our chapters lead our grassroots organizing work. And then we also have a medical advisory board and many medical providers who support the work that we're doing, either locally or on a national level, involved in the campaign at a local teaching hospital or in other kinds of work like the White House letter and those kinds of initiatives.

Dr. Sameena Rahman [00:30:25]:

Amazing. Well, for the listeners out there, what can they do to help tight? Is, are there ways for other than you? Obviously, you have to support the community somehow. So, I mean, there has to be some fundraising that has to happen, too for a nonprofit organization like yourself. So tell our listeners how we can get tightlip even stronger and better and mobilizing more.

Noa from tightlipped [00:30:49]:

Yeah. So we are definitely a small, scrappy organization, and every donation makes an absolutely enormous difference in what we're able to do. We are in the process of trying to launch brand new chapters at local teaching hospitals, hire staff to be able to do that. And so we have an ongoing fundraiser which people can access from our website@tightlip.org. But also through. We're very active on Instagram. So easy to find tightlip.org on Instagram. And then also for anyone who's interested in either volunteering or getting involved, both through our bio on Instagram and our website, they can sign up on our join tightlift form and get information about virtual events, in person events, and also access our other resources.

Noa from tightlipped [00:31:35]:

We have a podcast, we have an online zine, and we have other kinds of materials and information for anyone who's interested in learning more.

Dr. Sameena Rahman [00:31:43]:

Well, that's amazing. I really appreciate you coming on, Noah. And I think know the work that you guys are doing is going to make a dramatic impact on all Hova owners. So I can't wait to see all the good stuff that comes out of this. And the education that you're doing is amazing. And as a clinician who deals with this day in and day out, I'm so happy to always tell patients about you guys. Like, if you want someone to discuss your condition with or collaborate with, please go to Tightlift. So thank you for coming on today.

Dr. Sameena Rahman [00:32:15]:

Thank you for sharing your story. Thank you for all the work that you're doing.

Noa from tightlipped [00:32:18]:

It's amazing. Thank you so much. It's so great to talk to you. And I'm really excited to hear all the other podcast episodes as well.

Dr. Sameena Rahman [00:32:26]:

Yes, and we'll be collaborating in the future. All right, thanks, guys.

Noa from tightlipped [00:32:32]:

So that's it for today.

Dr. Sameena Rahman [00:32:33]:

And please join us next week for another exciting episode. We're here to educate so you can.

Noa from tightlipped [00:32:39]:

Advocate thanks a lot.

Dr. Sameena Rahman [00:32:41]:

If you have a second, please subscribe to this podcast. I'd love for you to be a follower and learn as much as you can about the things that we're going to talk about with all the people on our journey. Please review us on Apple or Spotify or wherever you listen to podcasts. These reviews really help review us. Comment tell me what else you want to hear to get more information. My practice website is ww cgcchicago.com. My website for Gynogirl is ww gynogirltv.com. My instagram is gynogirl so please follow me for some good content.

Dr. Sameena Rahman [00:33:16]:

Additionally, I have a YouTube channel, Girl TV, where I love to talk about all these things on YouTube. And please subscribe to my newsletter, Gynogirl News which will be available on my website. I will see you next time.