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Welcome to season two of Kicking Gout in the Acid. This season will dive into additional topics of importance to not only those with gout, but for those treating the disease as well. Whether you’ve been recently diagnosed, care for someone suffering, or are a medical professional treating the disease, the Kicking Gout in the Acid podcast can help you learn more.
This episode of Kicking Gout in the Acid features a conversation between Dr. Larry Edwards and Gary Ho, Executive Director and Co-Founder, Gout Support Group of America. The two explore the connection between gout and mental health, highlighting the emotional toll of the disease, the stigma patients face, and the importance of correcting misconceptions. The episode features a candid conversation with a gout patient and offers insights for both patients and healthcare professionals on improving care and understanding
Key Takeaways:
- The impact of gout goes beyond physical symptoms. Chronic pain, frequent flares and physical limitations also lead to mental anguish, which can be compounded through feeling unheard or dismissed by healthcare providers.
- The stigma surrounding gout is often tied to outdated beliefs about diet and overindulgence. Many physicians also hold biases. Despite clear evidence that gout is a genetic disease, the stigma surrounding the disease leads to shame and guilt in those with the disease.
- Misdiagnoses or dismissals of symptoms can occur, so it’s important for patients to monitor their flares and medical professionals to take patient-reported symptoms seriously.
- Don’t give up—find your voice, seek support, and advocate for your health. There are resources for those dealing with the disease. Find support through the Gout Support Group of America, the Gout Education Society and other organizations.
Start your journey with gout today via the Gout Education Society website and sign up for the monthly newsletter.
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Kicking Gout in the Acid is sponsored by Sobi.
Podcast Transcript
Ian Ponitz
Hello, and welcome to Kicking Gout In The Acid, a podcast from the Gout Education Society. My name is Ian Ponitz, and I’m your host for this series. Kicking Gout In The Acid features conversations between Dr. Larry Edwards, chairman and CEO of the Gout Education Society, and experts on the disease.
Each episode will dive into important topics that you, the listener, should know about gout. The goal? To feel empowered to get gout under control.
In this episode, Dr. Edwards is joined again by Gary Ho, co-founder and executive director of the Gout Support Group of America, a partner organization to the Gout Education Society. Today, Gary and Dr. Edwards will discuss the emotional and mental health impact of gout, the stigma surrounding the disease, and how better understanding can lead to better care. Dr. Edwards, take it from here.
Dr. Larry Edwards
Thanks, Ian. We’re very happy today to have Gary Ho, the executive director and co-founder of the Gout Support Group of America, with us. It’s been several months since you were last on our Gout Education Society podcast, Gary. Just maybe you could tell us very quickly a little bit about the Gout Support Group and what you’ve all been up to over the past few months.
Gary Ho
Yeah, absolutely. Thank you, Dr. Edwards. Thank you for the invitation back. It’s been quite busy the last few months. Looking at 2026 so far, we’re continuing to grow at Gout Support Group America. We’re actually closing in on 17,000 members.
It’s pretty amazing looking back to see what we’ve been able to do. You know, with some of the things that we are addressing currently, we’ve noticed that there’s been a barrier for some reason. People living with gout, when they experience a flare, they don’t think of therapy right off the bat. There’s a barrier that stops them from thinking about therapy or even keeping on their medication. And we believe with the Gout Support Group of America, it’s the understanding of the gout journey itself.
We’ve actually leaned into that, and so we’ve been working very hard. We created a GSGA gout roadmap that we will be launching very soon with our rebuilt website. So that will be launching in maybe a couple weeks. We’re super excited about it, and it’s going to be a tool for the community, for people living with this disease.
No matter what chapter you’re in in your journey, you can actually turn to this roadmap and identify where you’re at, and then it will give you encouragement, direction, and insight into the next step towards quality of life. So a lot of stuff is happening, and of course, you know ACR is right around the corner, so we’re preparing for that.
Dr. Larry Edwards
Yeah. Well, that’s excellent, and that sounds like a great approach to gout as a disease, that it’s not “take a pill and forget about it.” It needs constant tweaking and following up to make sure that your uric acid, of course, is staying in the right range, and just what options are open to you as things improve or don’t improve. So that sounds like it’s gonna be terrific.
I’ve been fortunate over the last couple years, Gary, to listen to the story of your involvement with gout. And along with that, there was a lot of misdirection, misinformation, as well as misdiagnosis, that kind of stretched things out for you and caused some undue suffering over time. I think that your story, your ability to overcome those problems, of staying self-aware, of looking for the right answers and not giving up on that, and not just giving in to the disease, makes you a model of what it takes to be a good sufferer of gout as far as being engaged in the treatment part of it.
Also, in your history, I know we’re not going into full detail of that since we covered that a few months ago, but, you know, there were a number of times where you reported that there was some significant sadness and just frustration with your clinical course.
I’d like you to discuss in a little more detail just what that was all about. For instance, just the emotional toll that a disease like gout can take, where there’s chronic pain, where there’s physical limitations, where there’s frequent flares that knock you out of the whole game of life for a while. Can you tell us a little bit about your personal experiences in that regard?
Gary Ho
Yes. Thank you for that question.
Mine was a 16-year journey of receiving a diagnosis. In fact, getting someone to actually hear what I’d been living through with gout and unmanaged gout.
So when we think of gout, we automatically think pain, big toe throbbing, intense, chronic, and all that is true, but beyond the physical pain, many people underestimate the mental anguish that someone goes through. My experience is not unique, unfortunately. It’s just not.
The fact of the matter is, when someone comes to their physician, someone that they trust and really look up to and hope to get some answers from, and they tell this physician, trusted partner, about their personal experiences, and then to walk away not feeling heard or belittled, that experience is beyond just the physical. It affects your mental well-being.
When a person’s living with gout, they’re experiencing pain, they’re reaching out, but they’re not able to feel like they’re heard. They’re not able to find that answer, solution, or even a direction on what to do next. They think it’s their fault.
Dr. Larry Edwards
Yeah.
Gary Ho
I mean, that takes a huge toll on your well-being. So it’s not just physical, it is emotional. And I would say the emotional is just as important as the physical pain that one goes through.
Dr. Larry Edwards
Yeah, there’s been some papers recently written on the stigma of gout, of how people around the gout sufferer view the disease, and how that might cut off communication, which might be very hurtful to the person suffering from gout. For somebody to dismiss it as a few days of pain here or there, when in fact it really is an isolating thing.
We did a study and looked at physicians and the bias that they hold for a disease like gout, and it’s really disappointing for the profession. It was a small study, but it was clear that physicians come into diagnosing and seeing patients in their clinics with these preconceived notions about why the person has gout to begin with.
I think part of the blame game is that there’s long been too much emphasis on diet and obesity as a cause of gout. We now know that it’s a genetic disease. It’s something that you inherited, that obesity may have an amplifying effect a bit on that, but at its core, it’s a genetic disease.
People have images from movies or history, everybody knows a little bit about King Henry VIII and his fight with gout, and have this feeling that it’s a disease of overindulgence, which is clearly not the case. In the past 20 years, those myths have all been laid to rest. But the bias, the bigotry, the stigma still persists. I think that that makes life hard for patients with gout.
You and GSGA have talked to a lot of people, 17,000 now, is that right?
Gary Ho
We’re heading there, yes.
Dr. Larry Edwards
Good heavens. You get a lot of input on these kinds of questions from your constituents in the GSGA.
Gary Ho
Mm-hmm.
Dr. Larry Edwards
Do you have stories of how people’s daily lives are affected? I know it was dramatic for you. Do you have people that suffer these biases or have really significant limitations?
Gary Ho
Yeah, we do. You know, stigma within the gout community is real. When it comes to stigma, we as a community suffer a lot. Even today, when you ask people about gout, the first thing that people will think about, or society as a whole, is diet, right?
Dr. Larry Edwards
Mm.
Gary Ho
When you think about diet, ultimately that road leads back to the patient, right? Because they leave the doctor’s office after talking about gout or trying to express what they’re going through, but they haven’t really been heard.
For example, nine out of 10 times, a patient will leave the office with a pamphlet talking about diet. Well, that basically implies that you’re in control of what’s happening, so change up what you’re doing, and things will get better. The implication is, “Hey, you’re doing something wrong. You’re overindulging.” And so that guilt builds. And if I can make a point anywhere for those that think they have gout or those living with gout, you mention it, Dr. Edwards, it is not their fault. It’s a genetic problem. You’re born with it. I was born with it.
My dad had gout, my grandfather had gout. There was nothing that I did that caused gout. I looked outside of what society thought gout would look like, thus the 16-year journey of trying to be diagnosed. But that’s where you and I come in, and people that have experience with this disease can empower others to see that the stigma of gout is real.
It doesn’t do any good to blame the patient. There is nothing that they did that caused gout. Talking about what gout looks like from the outside, Dr. Edwards, we have a woman on our board. She’s in her 30s, and she has gout. I know that’s rare, but she also struggled with being believed and being heard, just because of the stigma and what society and even our medical professionals, some of them, believe what a gout patient would look like.
These are real stigmas, and they affect people beyond physical pain. I mean, it affects their mental capacity in the way that people are not only dealing with pain, they’re dealing with loneliness, isolation, frustration. These are real issues. So I am so happy we’re talking about this today.
Dr. Larry Edwards
Yeah. No, that’s absolutely true. And you’re right about women in general, especially a 30-year-old, being viewed as an unusual demographic to have gout, but it is more and more common both in men and in women. And in post-menopausal women, it becomes just as common with them as with men in that same age group. We see that a lot, where the diagnosis of gout was simply excluded because the patient wasn’t an obese 50-year-old man, you know, that was beer drinking and eating steak.
Gary Ho
Right.
Dr. Larry Edwards
In your description of your course that we all witnessed a few months ago, when you were on the podcast, you were talking about the misdiagnoses that you’d had. There were several along the road. I was just wondering about the frustration of that. You’re going to see physicians to help you.
What kind of diagnoses were you given? Were you being treated for those diseases and failing? How did that work for you, Gary?
Gary Ho
Right. So there were multiple points along my journey where gout could have been caught, right? Ultimately, when I received my diagnosis, it was quite frustrating, honestly, to know that it just took a blood test to receive the diagnosis.
Dr. Larry Edwards
Mm-hmm.
Gary Ho
I say that with a smile now, but I was angry when I received my diagnosis because I knew all of these experiences could have been avoided if the doctor or the medical professional who I came to see would have slowed down a tad bit and really just been a little bit more patient and listened a tad bit more about what was happening.
So when we talk about misdiagnosis, it’s more of just underestimating the patient-reported symptoms that I kept repeating over and over and over again. Like going to a mechanic shop. Now, I use this analogy a lot. “Hey, Mr. Mechanic Man, my car is making a noise.”
And, you know, and when you bring the car in, the mechanic drives the car around and says, “Hey, I’m sorry. I don’t hear the noise. Bring the car back when it’s making the noise.”
That is the experience that I went through over and over and over again, and it wasn’t until I was able to connect with somebody that understood that pain has a name, and his name is Gary Ho, and he was able to slow down and actually put the pieces together. I was giving him clues, and he was able to put these pieces together and realize that, “Hey, the next simple step we should take is a blood test.”
So all that to say that the journey of prolonging unmanaged gout can be shortened if patient-reported symptoms are heard and taken a little bit more seriously. We need to overcome the stigma that we have with gout. Talking about gout and empowering people to find their voices is a good cause.
Dr. Larry Edwards
Yeah. I think your work over the decades of establishing the GSGA and then spreading your own story is an excellent example of where self-advocacy can take you, not giving up, not believing everything that you hear, especially when it doesn’t fit your personal reality. You’ve been a great example of that.
Where did you find that strength to be your own advocate and to keep pushing on it even when people were thinking that you were wrong?
Gary Ho
You know, when I tell my story, some people will come and ask me, “How did you do this?”
I’ll tell you, I’m not Superman. There were very many days where I said, “That’s it. I’m done. Life is over.” I do have pictures of me before and me now, right? So I actually documented my journey with pictures, and you can see me at the worst of the worst, where I was ready to give up. I look pretty angry and hopeless.
All this to say that there were some dark days, but when you hit the wall, there is this desire to survive, and we need to do everything we can to overcome. I knew I wasn’t crazy, Dr. Edwards.
Dr. Larry Edwards
Ha ha.
Gary Ho
I knew that when my ankle or toe was throbbing, that I was not imagining this sensation. I knew that the experiences of society and other medical professionals who belittled my experience was not right. But knowing that and living through it is something else.
I’m not anything special. There are many Garys out there who are fighting the fight and voicing up. And together, collectively, we can change up the conversation of gout because our mission is to really reimagine how gout is seen, talked about, and treated.
It’s one voice at a time, one step at a time, one webinar at a time, and that’s how we do it.
How do you eat an elephant, Dr. Edwards?
Dr. Larry Edwards
Ha ha.
Gary Ho
One bite at a time. And that’s what we’re doing, right? That’s how we’re focusing on our mission.
Dr. Larry Edwards
That’s all excellent, Gary. Thank you. And it kind of helps wrap up our session here today on the importance of mental health changes, and the biases that people hold against the disease, and how to cope with them. I think we’ve covered those issues very well.
Are there things that we missed in your mind, with all your experience with the 17,000 members, that we haven’t covered?
Gary Ho
I always love to end with hope, not with false hope, like many of us have experienced through our journey of getting a gout diagnosis.
If you have gout, there are treatments, there are pathways, and there are tools in the toolbox now that our medical professionals have that can actually proactively manage this disease in a way that we can claw back quality of life, quality of life that we all deserve.
So if you’re living with gout, you don’t have to be alone. There are gout support groups out there, like ours, that will offer you a chance to hear from others who are living with this disease in different chapters of their journey, some starting out and some on the other side of the hill, where they’re managing gout successfully.
If you have gout, don’t give up. There is hope. If you feel like you’re not being heard, be a little bit more assertive.
Find your voice. Speak up for yourself because if you’re not looking out for yourself, really, no one else will be.
Dr. Larry Edwards
Yeah, and I think looking out for yourself is one of the big messages we’ll take out of today.
Gary, thanks for joining us on this podcast. It’s always fun to listen to you, and I think I learn something new every time we have talking engagements together, so appreciate that.
We’re gonna turn it back to Ian. Thank you.
Gary Ho
Thank you.
Ian Ponitz
Thanks both for having this fruitful discussion today that can help those with gout, their caregivers, and medical professionals alike kick gout in the acid. If you have gout or treat gout, you can learn more through the website: gouteducation.org
Stay up to date with our organization by signing up for our monthly newsletter or by following us on X or Facebook @gouteducation.
We’ll be back next month with another episode of Kicking Gout In The Acid. Until then, make sure to like, subscribe, and follow our shows on Apple Podcasts, Spotify, and other major platforms.
Thanks for listening in.
