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The mission of Prevent Blindness Texas is to prevent blindness and preserve sight. We are leaders and change agents in the eye health space here to empower you!
Hey, it's your eye health experts, Prevent Blindness Texas, and welcome to Eyespiring, a conversation about all things vision and life. Welcome to Eyespiring with Prevent Blindness Texas. I'm your host, Heather Patrick, the CEO. Today we have a great guest on our show to talk about her experiences, her life, and really about the voice of the patient and how to use it to make change. PBT is a public health agency focused on vision.
Heather Patrick:We serve the entire state, and we provide all different types of services: screening, training, education, navigation services, and financial services. We served almost 60,000 people this past year and educated over 80,000. We are a team of nine, and again, we serve the entire state. We have an incredible board that also is from the entire state representing different voices to give us perspective on how to work in each community that we're a part of. So thank you for being a part of today's conversation.
Heather Patrick:And with that, again, I'm Heather Patrick, and I've been the CEO for eight years, but I have a career in nonprofit health care of more than twenty years. And I have to say that working with Prevent Blindness Texas is truly one of the best privileges I've had in my entire career.
Heather Patrick:With that, I am going to introduce Leslie to our show, and Leslie is a RN. She has over twenty five years of experience in healthcare. She is also a dedicated patient advocate and maybe a newer role for her, but one that absolutely she has embraced and made incredible changes already with her voice.
Heather Patrick:And so I'm going to let Leslie introduce herself and tell us a little bit about you, and then we'll go into asking you some questions. Leslie?
Leslie Nwankwo:Thank you, Heather. It's definitely a privilege to be here with you today. Yes, I was born and raised in Philadelphia, and during the course of that time, my family migrated to Texas. And so I've been in the Texas area for over thirty five years now. I consider myself a Texan. And like Heather said, I've been an RN for almost twenty nine years now. And I have, of course, had to move from the bedside because of my vision.
Leslie Nwankwo:And I moved out into the community and now I'm in the realm of academia where I am an adjunct professor in the graduate nursing program at the University of St. Thomas. I also am a director of education services at Care Basics LLC. I provide disease management, chronic disease management education to those who are blind and visually impaired. And I find that to be very rewarding as well. And like Heather said, I've just kind of gotten my feet wet with patient advocacy, and I'm loving it.
Heather Patrick:Good. All right. Let's jump in. So our first question for you is what drives you to make a difference?
Leslie Nwankwo:That's a great question. Over the years with vision loss, Heather, I have noticed that there are a lot of important voices out there that just have not been heard. And you and I know that sharing our story and sharing one's lived experience is very powerful. And so it just kind of drives me when I notice that a lot of us in the vision loss community tend to be invisible when it comes to certain arenas, especially the arenas that are designed to provide care to us. And that drives me a bit because I want to be able to elevate those voices.
Leslie Nwankwo:Because again, there's a lot of things that could be shared to make us more visible in those very realms that we tend to be invisible in.
Heather Patrick:And clearly, had a calling early on to serve because becoming an RN, right? Nursing is a tough job across the board, whatever realm you're you know, we we are so grateful to our school nurses because that is who we work with on a regular basis. Wow. But it is it is a calling. So how did you know? Like, what drew you to that to that? Why did you wanna be a nurse?
Leslie Nwankwo:Well I honestly speaking I wanted to be a doctor because I wanted to be in the health profession I did want to help people feel better but because I had an understanding that I had a visual loss, I actually went the complete opposite way and got my first degree in accounting. When I got out and started, yes.
Heather Patrick:I would have never guessed that, Leslie. Ever.
Heather Patrick:But when
Leslie Nwankwo:I got out into the field, I absolutely hated it. I couldn't stand it. So I immediately jumped back into school. Not that I didn't learn some good valuable things from being an accountant, not to take anything away from people who are accountants, but it wasn't me. I wanted to be with people. I wanted to help people, so I thought the next best thing would be to go into nursing.
Leslie Nwankwo:I come from a long line of nurses, including my mother. So I jumped into nursing school and I did pretty well going through my studies. And so even getting out of it, like you said, it just put me in a position where I could really help people. And I've just loved it from then on out. And I couldn't shake nursing.
Leslie Nwankwo:I just went from one setting to the next based on my vision loss. And that was the beauty of nursing that it allowed me to pivot in so many directions because of the flexibility in the different fields and the different settings. So nursing has been good to me.
Heather Patrick:I love that. I love that. Who inspires you and why?
Leslie Nwankwo:My family, my children definitely are at the core inspires me. But when it comes to self advocacy, Heather, I would have to say it's the community, my community, the blind and visually impaired community. When I interact with patient advocates like myself, when I join certain support groups and be a part of certain organizations that are in this vision loss space, I am totally inspired because just getting to hear their voices and hear their stories motivates me so very much because you're able to witness people who have turned their pain into purpose. I want to be just like them at the end of the day.
Heather Patrick:So when I think about you and a couple other questions go, why does using your voice matter? Why does being in the community matter? And you've addressed this, but talk a little bit about kind of how that has changed for you over the years of, you know, being a part of the community. And maybe ten years ago, you thought about using your voice, but you didn't just talk about kind of the progression of serving the community and using your voice and what that has looked like for you and kind of why now?
Leslie Nwankwo:That's a good question. I believe ten years ago I just didn't feel like I had that to give. It just wasn't on the radar. I think I was more in survival mode because of the various changes that I was going through with my vision. So I kind of was more internalized about everything.
Leslie Nwankwo:I knew I had to function in my career. I knew I had to take care of my family, but I never really sat down with myself to kind of understand internally what all of this meant to me. And it wasn't until I got engaged with the Aspects program, which I know we'll get into more about that later, hopefully. But it wasn't until I joined that program, and I kind of joined it on a whim. I had a friend who was signed up to be a part of the Aspects Patient Engagement Program, and she was part of the cohort at the time, and she had some family emergency issues, so she had to drop out.
Leslie Nwankwo:But she told me about it. And when I signed up with her, there wasn't any room in the program at the time. And so later on, they came back and asked me if I was still interested. And I said, well, sure, why not? It was just kind of one of those matter of fact things.
Leslie Nwankwo:But when I actually enrolled in the program and got through the program, I couldn't believe it just turned on so many light bulbs for me, Heather. I could relate with so much that was going on in that program and hearing other people like myself.
Leslie Nwankwo:And that's when it clicked for me. As a nurse, I've always been a patient advocate to some degree. But when it came to advocating for myself on a level or on a topic that I live day in and day out, it just became so real for me. And that only happened within the last couple of years.
Heather Patrick:That is so powerful. It really is, Leslie. It's just so powerful. So tell our audience about RP. What is it? What has your life been like with it? How has it changed over the years? Really help the audience understand what you see and don't see and what that means for your life.
Leslie Nwankwo:Sure. I live with RP, which is a inherited retinal disease. So I was born with it. RP is basically a rare eye condition that affects one in four thousand people globally. It starts off by destroying one's peripheral vision, and it encroaches on my central vision, and later created this tunnel that is so narrow.
Leslie Nwankwo:So I'm having to look out at this narrow tunnel that eventually one day may close off. So just imagine living in a world where your vision or your world per se is shrinking into this narrow tunnel. That's what RP is to me. RP is very unpredictable in its pathology. And at times it really serves to make me feel a little helpless because just when I think I've adjusted to one level of vision loss, another level of vision loss takes place.
Leslie Nwankwo:So that can be very challenging. Just to give you an idea of how it's progressed over the years, when I was in grade school, of course I had the Coke bottle bottoms where you're holding up everything to your face, and I was okay with that for a while. And then it progressed during my undergraduate studies to where I would need little handheld magnifying devices. I would always need large print information or large print material to get through in school. When I get out into the professional realm, I use more magnification software, more magnification gadgets.
Leslie Nwankwo:I mean, if you look around my house, there's tools and gadgets everywhere. But again, people trying to support me while I'm engaged in my work. But as we sit here today, I'm totally audio for the most part. I rely heavily on screen readers and that kind of technology to perform most of my personal and professional tasks. And that's how I pretty much get things done.
Leslie Nwankwo:My vision in my right eye is a counter finger, and my vision in my left eye is light perception. So I don't really see a whole lot, but I use all of my technology and all of my other senses to really get the job done.
Heather Patrick:So what did your what has RP taken from you, and what has it given to you?
Leslie Nwankwo:RP has taken quite a bit from me, Heather. I would have to say that for the most part, it's taken away my sense of certainty because it is hard to hold on to what you think is a certainty when there's always constant shifts and changes in your vision. The only thing that I can say for certain these days is that I know that the Lord loves me and it's because of that grace over my life that I can handle some of the things that RP has taken away from me. RP has taken away my ability to drive. It's taken my ability to make eye contact with people.
Leslie Nwankwo:It's taken my ability to go in the room and just be able to scan my environment. One of the most devastating things that RP has taken away from me is the faces of my young adult children. My children range in ages 22 to 26, and I lost their faces literally when they were in grade school. And that was the most devastating to me. But on the other hand, I have to say that RP has given me some really interesting tangible things that I never expected to receive, and that's resilience.
Leslie Nwankwo:I've had to really learn how to accommodate and adjust, and that has created a level of strength in me that just doesn't quit. I just don't intend to give up. It also has helped me to build stronger alliances with people in my community. It's helped me be more empathetic towards other people with disabilities. And it's actually given me a deeper purpose, a deeper sense of purpose for why God has put me on this earth. That's the answer to that.
Heather Patrick:You are just amazing. I just want you to know that. Truly, you really, Leslie, you truly are just incredible. Your perspective, your approach, just you. You are amazing.
Heather Patrick:Thank you. Do you wish people knew about vision loss? What do you what you know, if they take nothing else away from this conversation, what do you want them to understand about vision loss and why it's so important for them to understand?
Leslie Nwankwo:Yes. I would like for people to understand that vision loss is not just the physical side of things where I can't see, or it's not just about being in the dark. It's so much more complex than that. I would like people to know that when we are going, people with vision impairment, people that are blind, when they're experiencing these losses in their lives, it's really about them being able to pivot, to change, to adapt. Because at the end of the day, all we want to do is to continue to function, to continue to be in the game, to continue to live our lives and our relationships productively.
Leslie Nwankwo:And so I think it's difficult sometimes for sighted people to really see or understand what we go through as people that are sight impaired or blind. I don't want people to think that it's the end of the line for us or a period to our lives, or we've come to this place where things have to end or come to a screeching halt. It's not any of that. But I really do want them to understand that our vision loss impacts every facet of our lives from the time I wake up to the time I go to sleep. My vision loss impacts every bit of that and everything in between.
Leslie Nwankwo:So in essence, I would want people to understand that all we're trying to do at the end of the day is remain in the game. We're trying to just learn how to shift and adjust so that we can continue to navigate the world around us.
Heather Patrick:That was beautifully said. You have such a great way with words. I told you that the last time. You really do. It's just incredible how you can clearly articulate and paint such a picture.
Heather Patrick:So how have you found success then? Because there definitely and give the audience just an example of one challenge maybe that you deal with every day and how you have found success through it. But ultimately, how have you continued to find success, you know, doing what you want to do?
Leslie Nwankwo:There's so many challenges, Heather. I wish we had a lot of time. I would go through them one by one, but I know we don't have that kind of time. But if I really just wanted to summarize challenges, so to speak, I think a lot of my challenges were influenced by my feelings of isolation, feelings of frustration, and feelings of fear. In the beginnings of my journey, I felt like I really wanted to isolate myself.
Leslie Nwankwo:I was brought up to believe that I shouldn't really reveal my disability. And so I didn't want to look like I needed help or I had an issue. And so I did isolate to some degree. I also had the fear of being rejected. And so I wouldn't share a lot of things because of that.
Leslie Nwankwo:And I even went to the opposite extreme to kind of overperform and overachieve just to prove to people that there wasn't anything missing about Leslie. And that was stressful as well. And then there was just the feelings of feeling frustrated because there are spaces out there that really don't necessarily understand what we need as people who have vision loss. And so sometimes you get out there and you hear some of the things that people say and you feel frustrated because they just can't relate. But I think I've found success over those challenges by really embracing my community.
Leslie Nwankwo:I didn't want to be a part of that community at first, but now I see the beauty of really identifying with them because we share a lot of the same struggles. We can inspire people or inspire each other in a way that people outside of our community can't. And when I say community, the blind and visually impaired community. I also found success in being able to just ask for help. I had a lot of pride in the beginning, so I was not going to ask anyone for help.
Leslie Nwankwo:Just opening up myself to receiving help from others did wonders for me being able to succeed. And even using the tools that I had with, you know, that I had even like my cane was up in the shelf or my, you know, thrown on the corner of my closet somewhere because I didn't want to be seen with it. So using, embracing those tools and asking for help really, really made a difference. And I think also too, Heather, not allowing people to put me in a box and shrinking to people's expectations of what they think a blind person should and shouldn't do. I think those things have helped me to really, embrace my vision loss, and those things have helped me to succeed into where I am today.
Heather Patrick:That was great. Okay. So let's shift a little bit into now in your patient advocacy journey. So you touched on a little bit, but talk more how this really all began for you and where it's taken you.
Leslie Nwankwo:Okay. Like I said, with the patient aspects engagement program through Prevent Blindness, that is really where the whole self advocacy piece came into play for me. I knew that there were things that I was frustrated about. I knew there were things that I really didn't have answers to.
Leslie Nwankwo:And even with what I do as an educator, a health educator, even with providing disease management training for the blind and visually impaired, I noticed that the people that I was serving, some of them, most of them had glaucoma and diabetes retinopathy. And I looked at them and it just seemed like they had options for care or options for improving their vision, even if it just improved it just a little bit, just slightly. Even in those eye conditions, I mean, they have the ability to exercise some preventive measures to help protect their site. But I noticed that people with RP really didn't have options like that. And so that got me to thinking, why did they forget us?
Leslie Nwankwo:Why are we being left out, so to speak? And so that left me wanting to get answers. And that's why I became more involved. So that's how it started for me. And it just kind of mushroomed from there.
Leslie Nwankwo:I really discovered that sharing my voice gave me the power to be seen. And it also gave me the power to express information on behalf of myself and others. And I've gotten a hold of that and I just really don't want to let that go.
Heather Patrick:So what have you learned through this process? So you've been doing this now for what, two years roughly around there, a little bit longer. So what have you learned? What been your lessons learned through this process?
Leslie Nwankwo:That's a great question. Still learning a lot because I feel like a newbie in this this realm. But would have to say that I've learned that advocacy is not immediately, it's not immediate. It does take time. You do have to be patient.
Leslie Nwankwo:I also know that advocacy is not a solo act. It does involve various people on various platforms coming to the table to collaborate with others and share your experience amongst people who are from various backgrounds. And so that has been very interesting to me. And like I said, advocacy does take time, especially when you're dealing with certain agencies like the government. But I've learned that it's not really my responsibility to be worried about the outcome.
Leslie Nwankwo:I just need to show up and I just need to share my story. And that's what's important. And I hope to continue to do that.
Heather Patrick:Good. All right. So let's talk a little bit about that. So sharing your story got you connected to a process with the FDA. So talk about that. Talk about how you got connected, what the process was like, where it's landed. So talk about the FDA experience.
Leslie Nwankwo:Okay. I got connected with a company in Dallas, and that was through Prevent Blindness Aspects Patient Engagement Program. And that was a company who is actively working on a treatment modality for retinitis pigmentosa. And they wanted a patient advocate to follow them to Washington, D. C. And sit with them in their meetings while they try to get approval for this treatment modality.
Leslie Nwankwo:And so I felt very privileged to be able to join them in D. C. Twice. And I opened up the meetings by sharing my story. And it was really, really profound to me.
Leslie Nwankwo:I was able to be in a position where I could put a face to people who have RP. I was able to share real world experiences, my lived experience with living with RP, and just being able to give them an understanding of what we face with dealing with RP and what our concerns are, and at least present the urgency for having a treatment modality that's available for most of us suffering with retinitis pigmentosa.
Leslie Nwankwo:And so they allowed me to open the meeting, and then they proceeded with the meeting. And even after the meetings, it was just very interesting, Heather, how all of them would just come to me and shake my hand and thank me for sharing my story and just adding perspective to what they knew about RP in general. And they just felt like it was very incredible to hear my story.
Leslie Nwankwo:And what it taught me was that even though there's all of this bureaucracy in a lot of these agencies that are going on, there's still people like me and you. And people are just craving to hear other people's stories. And so it just brought a humanness to that whole scenario that I didn't really think about before. But it was definitely a life transforming experience. They are still in the approval process because of course FDA approval is a long and tedious process, but I'm keeping my fingers crossed that hopefully they'll be able to go all the way through and be approved in what they're trying to do for us.
Heather Patrick:It's amazing. And it really is a testament to why our voices do matter. And it is about telling our stories. That's why conversations like this are so important. People connect to people.
Heather Patrick:It's easy to make assumptions or, you know, think you know until you hear the truth of what it is like, right, truly having that insight and perspective. And it may or may not change to your point. It may or may not change the outcome, but at least you have used your voice to try and do something that will improve the outcome. Absolutely. That is the key.
Heather Patrick:And I think that that is pretty amazing. Okay. So what are three steps that someone can take if they really want to become a patient advocate? What would you recommend?
Leslie Nwankwo:Okay. For me, I think first I would recommend that you just get used to sharing your story with people that you're surrounded by. Share your story with your healthcare provider, share it with your family, share it with your support group or whatever community network that you have. You can even put things on social media. At least you're putting your story out there.
Leslie Nwankwo:You're making yourself heard. And each time you say something, your voice becomes just a little bit stronger than it was before. Secondly, I would encourage people to educate themselves as much as possible. I'm an educator, that's one of my core values. Educate yourself about your eye condition.
Leslie Nwankwo:Educate yourself about maybe some current legislation surrounding vision loss. You don't have to know every single detail of a piece of policy or legislation, but just become familiar with that. And then thirdly, I think it would be an awesome idea to join a group, a network, an organization where you can hear other people in those same advocacy circles talking about different things. You can hear about different topics that are affecting us in our vision loss journey. That is to me the best way.
Leslie Nwankwo:And that kind of sparked me into what I'm doing today. That's what's brought me here to this podcast is the fact that I joined an organization, Aspects, through Prevent Blindness, and that opened up a world to self advocacy and me being able to have that conversation with people and telling my story.
Heather Patrick:Yeah. So talk a little bit more about that program in particular. And I'm curious, who did you practice your story on? Once you go through that process, and, you know, I know that's part of what the program talks about, but who did you how did you start telling your story? Who did you tell it to first?
Heather Patrick:Did you share it out on social media? So talk a little bit about the program and then how you responded throughout the program.
Leslie Nwankwo:Okay. The program involved a ten week program. It was a ten week session. We were part of a cohort where we met with other, individuals who had various different degrees of vision loss and different conditions, of course. And as part of that program, they did give us a lot of perspective on what it means to share our story, the value of sharing our story.
Leslie Nwankwo:We were actually given different exercises where we had to create our story, our elevator pitch where we timed ourselves. What would you say if you had to say something to someone in three minutes? What would you say if you had just seven minutes? Who was your audience? Who were you trying to capture?
Leslie Nwankwo:What do you want your audience to feel? What is the call to action? Those were all the skills that I developed explicitly through that program. And then because of being a part of the program, again, I was introduced to different companies and different platforms that were seeking patient advocates. And once I was given those opportunities, I definitely participated.
Leslie Nwankwo:The FDA meetings were one of those. I actually also was invited by the Association for Research for Vision and Ophthalmology, where I went out to share my story with the legislators on Capitol Hill regarding funding for vision research. I've also been out to Congress again through the National Federation of the Blind, where I spoke to legislators about just manufacturing of goods. I mean, I don't want us to be left out as people who experience vision loss when you're making different products out there. I want to be able to go into a hotel and not have to worry about it just being a touch screen where I can't really see the screen.
Leslie Nwankwo:So being able to advocate for that was important. I also remember joining you at the fundraising campaign that you had just recently with Prevent Blindness and sharing my stories. Just being able to accept all of those opportunities and just participate as much as possible. That has been really, really critical to strengthening my advocacy muscle. And when you say sharing my stories, I started out with just talking to my healthcare providers.
Leslie Nwankwo:I started with talking to even some of my consumers that I relate to for health education, you get to a place where if you get an opportunity to open your mouth and just share something as little as it is, you will take that opportunity because you realize the more and more you do it, the more and more you are bringing awareness to that whole vision loss realm that a lot of people just don't understand unless you share your story.
Heather Patrick:Yeah, I think that is a great point. I think that is one of the reasons I really have been drawn to this healthcare community, the nonprofit specifically healthcare community for over twenty years, because when I look back, I've had all different positions with all different organizations, but there's always been this thread of advocating, of the desire to improve outcomes for patients, the desire to improve access to care for patients, whatever that means in each kind of organization or disease or space.
Heather Patrick:But it all comes back to there's got to be a better way to serve our patients. And I really think that this industry gives us that opportunity and platform to do things, to advocate to do things better.
Leslie Nwankwo:I agree. I agree 100%.
Heather Patrick:And so that's why I love this organization so much, and we get to meet people like you. Yeah, I will tell you, you were the best part of the night at Dart Dining. Your story was incredible, and I think the audience left really having a much better understanding of why we do the work we do. Prevention, education, resources, having the communities invest in eye health. I mean, that's really what this is about.
Heather Patrick:You can't prevent every single eye disease, but many of them you can. But it's just bringing people together too and having these conversations and building those support networks and just serving people to help people.
Leslie Nwankwo:And I'm definitely a beneficiary of that work that you do, Heather. I mean, as I sit here, I hope you recognize that everything, and that's what I tried to communicate too during that dark dining event is that everything that all of you all are doing in the nonprofit space, every effort that you all make, it makes a difference. That's the reason why we are still here. And I appreciate that. So I want to take this opportunity to thank you.
Leslie Nwankwo:And just on behalf of my community, I just want to thank you and the many others that put in so much sweat and so much equity to making a difference and providing the resources for people like me. Thank you.
Heather Patrick:Thank you, Leslie. Thank you. It's a tough business some days, so that means a lot. It really does. Thank you so much.
Heather Patrick:Okay. Well, that wraps up our conversation. Thank you so much for your honesty, for your perspective, and for being you, and for using your voice, Leslie. You have made a difference, and I know you'll continue to make a difference. So thank you so much, and thank you to our audience for listening today.
Heather Patrick:As always, you can get involved with Prevent Blindness Texas Texas in many ways, volunteering, coming to one of our events like dark dining, of course, supporting us, or just following us on social media and learning and sharing out information.
Heather Patrick:There are all different ways to get involved. And as always, don't ever hesitate to reach out. We are always available to engage, and we'd love to have you as part of the PBT family. Don't forget, if you haven't subscribed to I Spiring, please do.
Heather Patrick:And as always, we always sign off with talking about, let us know what your vision is. Thanks and have a great day.