- Hear how Hillary Golden went to an optometrist and left with life-changing news.
- Learn about how Hillary launched her platform Glaucoma Coach and has worked with other patient-focused organizations to keep the patient’s voice top of mind.
- Hear about how Hillary has used her platform to advocate for patients in Washington, DC.
- Be inspired by Hillary’s advice on how to get involved and advocate for yourself if you are facing a health challenge.
Kerri Fitzgerald:
Hello and welcome to another episode of My Hero 360, the community platform that brings you stories of inspiring individuals who are making an impact to advance the awareness and advocacy of individuals with different medical conditions. My name is Kerri Fitzgerald, and today we are highlighting the hero story of Hillary Golden. Hillary, thank you for speaking with us today.Hillary A. Golden:
Thank you for having me, Kerri. I’m excited to be here.Kerri Fitzgerald:
Awesome. Well, let’s jump into your story. You were diagnosed with normal-tension glaucoma about 5 years ago. This is a condition that impacts vision and can lead to vision loss in some cases. How did you come to find out about your diagnosis? Were you experiencing certain symptoms, or having changes in vision? What was that like?Hillary A. Golden:
Glaucoma is called the silent thief of sight for a reason because your brain is very smart. As you’re losing vision, your brain is filling in data; it’s called interpolating data. You’re losing vision and it’s kind of piecing together these parts of your vision in order to keep you seeing. I didn’t really have any symptoms at all. When I had a stye, I went in to see an optometrist. We did a full eye exam at that point. When my eyes were dilated and the optometrist looked in my eyes, she said, “I don’t like the look of your nerve.” I said, “Well, I’m actually here about this stye, so I don’t really care about this nerve thing.” She said, “Well, I’m more worried about your nerve.” It started multiple tests to see what was happening with my eyes. Once we finished the test, it was found out that I had lost almost 40% of my sight, which is a shocking diagnosis. When you get that information, at first, you go through all the stages of shock, and then disbelief, and then trying to make sense of it all, then finally acceptance. But it takes a while to get through all of that. At first, I didn’t understand glaucoma enough; I thought it was something that only if you were 70 or above that it affected you. It was just kind of a fluke, and I didn’t really understand enough. Once I started learning more about glaucoma, that’s where it really started hitting me about how bad my eyes were. It just kind of changes how you perceive everything, and how you decide to move forward because some people get stuck, which I did get stuck at several points throughout my journey. Then I had to move past that because you can’t stay stuck; it’s not a healthy place to be. Just kind of grappling with the diagnosis, learning more about it, learning what to do. How to take care of myself through the journey was really important because everybody deals with a diagnosis differently. It was learning what I needed and how I needed to deal with this that really helped push me forward and move past all the stages and really kind of accept it, and then, in turn, start to help other people.Kerri Fitzgerald:
Right. I imagine you went in thinking, this is something benign, right? A stye; a stye is not comfortable at all, but certainly you weren’t expecting this. I imagine that was even more of adding to that kind of shock and emotional reaction to this, right?Hillary A. Golden:
It was because like you said, a stye, it was bothering me, and I put a warm compress, and I tried these things, and it wasn’t going away. In hindsight, I look back at it and I say, “Well, I had this stye, and it made me go in to get my eyes checked.” It was kind of a blessing in disguise in that way, and that’s how I see it. I had been to ophthalmologist for the 7 years prior to my diagnosis; I’d been to 5 different ophthalmologists and none of them found the glaucoma. Being diagnosed from an optometrist at just a visit for a stye, that was the shocking part, like you said. I was like, “Why didn’t anybody else find it; I’ve had eye exams?” As you mentioned at the beginning, I have normal-tension glaucoma, so normal-tension glaucoma usually isn’t diagnosed until there’s a significant loss of sight because there’s no red flag with the pressure. Usually, glaucoma is based on high pressure, and so that’s a red flag. They may be watching you for years before you even have any sight loss. But for me, them not really seeing any red flag, they just thought my eyes were okay. Finally, my nerves started showing the damage, and that’s when the optometrist said, “We need to do some more tests and find out what’s going on.” Yes, that was definitely a shock. You think you’re taking care of yourself and you’re going to the doctor, and then something like this happens. It just shows that you just never know what’s going, on and you always have to get regular eye exams. I’m a huge proponent for regular eye exams because they make such a difference, and there’s so many different eye diseases. It just takes a few minutes and just go in, get an eye exam, and that’s what I try to advocate for, for patients.Kerri Fitzgerald:
Yeah. Like you said, it is really important to stay on top of those eye exams because we can uncover various different things. After you were diagnosed, you created this and launched this personal brand Glaucoma Coach. You now coach other individuals with glaucoma, and you do various speaking endeavors, corporate consulting, advocacy to provide this really crucial perspective from the patient, right? Why did you decide to lean into this mission and create this company?Hillary A. Golden:
When I was diagnosed with glaucoma, I thought there’s got to be a reason that I got diagnosed with glaucoma, and I need to do something with this. Because my background is 20-plus years in medical sales, then I went into glaucoma device sales, surgical sales with glaucoma. I learned a lot more about the surgical side of glaucoma and different options for treatment. When I started Glaucoma Coach, I saw that there was a gap in the market. What I see is the doctors are so inundated with patients because there’s not enough glaucoma specialists; there’s not enough ophthalmologists out there. When you get sent to a glaucoma specialist, you are in a row; it’s so busy. Sometimes the waiting room doesn’t have chairs because there’s so many people. You don’t get a lot of time with your doctor, and there’s different times where you have certain appointments where you will have more time, but the time you have is very limited. Patients don’t get a chance to ask all the questions that they have, and they don’t get the information that they need at their appointments necessarily. There’s this huge gap, and the longer the time goes on where they’re used to going to the glaucoma specialist, and only having a few minutes, they just stop asking questions, a lot of people. It’s actually the opposite of what we need to happen; we need patients to ask questions because they need to advocate for themselves. I had patients start reaching out to me when I was doing a couple of webinars to ask me questions, and ask me for help, and I said, “Well, this is a need. They’re not getting this, there’s a problem here.” I have enough information that I can help fill this need. Specifically, I don’t give medical information. I explain to patients what’s going on; I walk them through kind of the steps. Some of them don’t understand the glaucoma or the different, it’s a multi-layer disease, so it’s not just one thing. You’ve got your optic nerve, you’ve got your pressure, you’ve got other things happening inside the body that can change your eye pressure. There’s a lot more to understand than just, “Oh, use these drops and get your pressure down.” Once I realized that I can help walk these people through this, because I just kind of threw myself into research after I got diagnosed, and have not stopped since. That’s really helped me raise the bar for my learning and learn how to self-advocate. I’ve had patients reach out to me and say, “I want to be able to advocate for myself like you do.” It just kind of organically happened that I started doing it. Then I started speaking more for nonprofits, and then have had pharmaceutical companies, device companies reach out asking me to speak for them. Then doing some consulting with marketing and focus groups and things like that. It’s kind of just developed as I’ve gone on, and it’s just kind of filling the gap of what’s missing. Coming from my medical sales background and being a glaucoma patient, I have a different perspective. Being able to bring that to the market, I think, is a calling for me. That’s why I think this happened for a reason, and I really feel like I can help people.Kerri Fitzgerald:
Yeah. Absolutely. It’s so important for patients to have a seat at the table, right? To have a voice when these conversations are going on because you are the one living it day-to-day. It’s important that clinicians, industry, all the different parties that are involved in care treatment and management, that your voice is heard as well. That’s really important.Hillary A. Golden:
Absolutely. The patient voice is so important, and it really does need to be heard. I recently did a webinar with a glaucoma specialist and a researcher, they’re both researchers and doctors. But what’s missing a lot of times with the researchers and the patients is they don’t get to talk to each other. When they get to hear from a patient, it makes their job more worthwhile because they see who they’re trying to help. The same with doctors, they get into kind of the routine of seeing patients every day, and you kind of get blinders on because you’re just going through the motions, and you’re seeing your patients and you’re just going through the day. You’re not really always listening to patient’s stories. Now, there’s definitely exceptions to that; I’m not saying that it’s just nonstop, they just kind of go through the motions and that’s it. That’s not how doctors work. But for a lot of people, if you don’t speak up, if you’re a kind of a quieter patient and you don’t ask questions, then you might just kind of go through and not get as much attention. That’s why it’s so important for patients to advocate for themselves.Kerri Fitzgerald:
Yeah. In addition to the individual coaching that you’re doing with other patients, other individuals going through this experience, you work with a number of organizations such as The Glaucoma Foundation, Prevent Blindness, National Alliance for Eye and Vision Research, Patients Rising, and the Glaucoma Research Foundation. Can you talk about the work that these organizations do and how your personal mission and goals align with that?Hillary A. Golden:
All of these organizations that you mentioned are all nonprofits, and I am passionate about working with nonprofits and bringing the voice of the patient to life. What all of these organizations have in common is that they are pushing for patients to be in the forefront and for patients’ voices to be heard. With specifically Prevent Blindness and Patients Rising, there are different legislation that are out for votes. I’ve gone to D.C. with Prevent Blindness. I’m going again with Patients Rising, and we are going to talk to congressional leaders and talk to them about what we need help with and be the voice of the patient for those patients that can’t or don’t want to do it for themselves. I think it’s so important to represent the patient, the glaucoma patient, in those aspects. With the National Alliance for Eye and Vision Research, I went and spoke at a congressional briefing, and I think it’s important, again, to advocate for research for glaucoma. There’s a lot of different therapies out there; there’s different surgical devices, but we really need new and novel therapies, so not just this device works and this surgery works, so let’s make something similar to that. But something just totally new and out of the norm, and that’s what research can do, and that’s why funding research is so important. Again, with The Glaucoma Foundation, they’re very patient-focused, and they have patients on the forefront and have patients talk with doctors. I just did a webinar with them recently, and I was on the webinar with the doctor. I think it’s important to balance the doctor perspective with the patient perspective. Then with the Glaucoma Research Foundation, again, put patients in the forefront. I’ve worked with them and then webinars as well. I think that getting that information to patients is so crucial, and those organizations are really helping to get it out there.Kerri Fitzgerald:
Then you spoke about Congress. You’ve been a number of times, and you were just recently there with Dr. Thomas Johnson of Johns Hopkins University. What was your message to Congress on that particular visit?Hillary A. Golden:
On that visit, I really shared my story because I want everyone to understand that glaucoma can affect you at any age, number 1. Then to give it really a personal perspective, instead of just saying, this is what glaucoma is, and it’s usually a disease of high eye pressure, and this is how you lose sight, and just going through the science of it. But to put a face to it and say, “I am the face of glaucoma, I have glaucoma. You are helping patients like me. I am the voice of thousands and millions of glaucoma patients, and we want to be listened to.” I think really that visit was just to kind of share my story, to be the face of glaucoma for these people to understand, “Oh, okay, she has it. Okay, well, if she has it”… Because you have this stigma in your head, and it’s in a lot of marketing campaigns that I see too, that glaucoma is like these 2 grandparents sitting on a park bench, and they’re retired. That’s not real life because glaucoma affects everybody. Even children are affected and can be born with glaucoma. It’s so important to get those regular eye checks that we talked aboutKerri Fitzgerald:
Yeah. To personalize it, like you said to make it less clinical, right? You’re seeing someone standing in front of you talking about their experience. You mentioned that research and new and novel therapies, or management options are really important. But what would you say are the top issues impacting individuals with glaucoma that you think need to be addressed from this kind of legislative congressional aspect of things?Hillary A. Golden:
I think that some of the main issues are just getting funding for the research. A lot of research is being cut right now, so I envision research top of mind so that research doesn’t get cut, that research that’s ongoing keeps going, that grants are still available for researchers going forward with new therapies that they’re looking at instead of just cuts across the board. I envision research needs to stay top of mind. As far as patients, that’s really what’s important for us, is continuing the research. Also to keep developing therapies that are easier on our eyes. There’s a lot of glaucoma drops out there, and a lot of them have preservatives. To be able to use glaucoma drops without preservatives, it helps to preserve the surface of your eyes. That’s really important to keep those available for us, and to monitor the safety and efficacy of new therapies that are out there. Not to be scared to think outside the box. There’s other therapies; there’s new goggles on the market that use negative pressure to lower your eye pressure. You wear those at night while you sleep because eye pressure goes up at night, and that’s something that’s out of the box. It’s great that those are now FDA-approved and now they’ve got to get Medicare and insurance on board with that. But there’s so many different therapies, and I think those are going to be the ones that are going to make a huge difference to us.Kerri Fitzgerald:
What would you say to someone who is, whether they have glaucoma or maybe a different medical condition, who wants to get involved, wants to elevate their voice, wants to make a difference somehow in the ways that you have? What kind of advice or recommendations would you give them?Hillary A. Golden:
I would find out what is your background? What is your experience? Where can you help the most? Just kind of think about that. Roll that through your head, and figure out, do I want to go advocate in Congress? Do I want to help other people? Do I want to encourage people to get eye exams? I mean, you don’t have to do something on a grand scale; you can do something on a small scale and just remind people, “Hey, not just glaucoma can run in families.” You don’t want to just remind your family, but you also want to remind your friends, say, “Hey, glaucoma is very prevalent, and make sure you go get an eye exam this year.” Just those little things can make a huge difference in someone’s life because even if they don’t have glaucoma, they might have something else, or they might just need to get an eye exam. Those things are very easy things they can do, but I think the best place to start is to advocate for yourself, and learn how to ask questions, not be scared to ask questions of your doctor, not be scared to get a second or third or fourth opinion if that’s what you need to have peace of mind. I think that really has helped me because at first, you don’t want to hurt your doctor’s feelings and get another opinion, but it’s so important for you because, especially with glaucoma, if you go to 5 different glaucoma specialists, you could get 5 different treatment options from each of those doctors. It’s just good to see, well, what does this doctor think, and what’s their rationale? What does this doctor think? What’s their rationale? Then you can make an informed decision based on that information. If you just have 1 piece of information, 1 doctor’s opinion, you don’t really know. It’s not like you have to go see the other doctor, you can stay with your doctor you started with. But it’s just getting that information and finding out what else is out there. That can make a huge difference. Once you start doing that and advocating for yourself, then you can kind of spread that broader with, like I said, whatever your background is and your experience, then you kind of can use that to take on where you want to go next. I think it’s really important for patients if they feel like that’s something they want to do to explore those things.Kerri Fitzgerald:
We like to conclude these My Hero 360 interviews by asking, knowing what you know now, what would you tell your younger self or your pre-diagnosis self?Hillary A. Golden:
I would tell myself that everything changes. Change is the only constant. When you’re having a great day, it’s only going to last so long, so appreciate it. When you’re having a day, it’s only going to last so long, so understand that and give yourself some grace for that constant, which is change.Kerri Fitzgerald:
That’s great advice. Very applicable to really anyone dealing with something out there. Thank you so much, Hillary, for sharing your story and for really making a difference by using your voice to advocate for optimal outcomes for patients. The work you’re doing is really so important. Where can viewers find more information about Glaucoma Coach and connect with you?Hillary A. Golden:
I am on LinkedIn under my name Hillary A. Golden. And on Instagram, it’s !Glaucoma_Coach. I am on X as well, the same !Glaucoma_Coach, and my website is GlaucomaCoach.com.Kerri Fitzgerald:
Awesome. Well, thank you again, Hillary. It was great to speak with you about this today on My Hero 360.Hillary A. Golden:
Thank you, Kerri. – Connect with Hillary Golden: https://glaucomacoach.com/ https://www.instagram.com/glaucoma_coach/ https://www.linkedin.com/in/hillaryagolden/ About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world. Support My Hero 360: https://myhero360.com/ https://www.instagram.com/myhero.360/ https://www.tiktok.com/@myhero.360 Listen To Our Heroes’ Stories: Spotify: https://open.spotify.com/show/1LnJ9ce28OkweYcopCZx2L?si=ae174fd84ef44334 Amazon Music: https://music.amazon.com/podcasts/aa426e78-fb79-4978-8851-d5aab25cf951/my-hero-360 Subscribe to this channel for more inspirational stories.Related Content
