Patients Make Progress Possible | Hypopara Series: Part 3

In part 2 of our conversation with Patty Keating, we dive deep into how hypoparathyroidism can affect the whole patient. Patty shares vulnerable moments that highlight symptoms such as brain fog, emphasizing how truly debilitating and isolating it can feel. The conversation also discusses treatment options, specifically how the HypoPARAthyroidism Association has helped to bring an FDA-approved option to market. Patty continues to be a voice for patients with hypoparathyroidism everywhere through her podcast, HypoPARA Unscripted.

Watch part 1 of Patty’s interview.

Kerri Fitzgerald:

Let’s talk about the work that has been done to bring a treatment that is specifically indicated for the condition, and as you mentioned, more appropriately targets the root cause of the condition and the problems that it causes. It was 2024 that the first treatment was approved by the FDA specifically for hypoparathyroidism. It’s called palopegteriparatide. How would you say this treatment compares to the conventional treatment that was always available before this? What are some of the real-world, patient-first experiences that you’ve heard for people receiving this treatment?

Patty Keating:

It’s definitely been a game-changer for a lot of people. Again, everything’s not perfect for every single person. Hypopara is so different for everybody. There were tons of excitement around it. There’s still tons of excitement around it. It’s a shot a day that people have to take based on whatever their levels are. It really does help with the parathyroid hormone and then the calcium… I always say it comes along for the ride and I’m non-medical, but in my mind that’s how it works. We get that parathyroid doing what it’s supposed to do, then the calcium comes along for the ride.

I think the community is very excited about it. I think that it’s like the bell curve. You have your early adopters of the people that are going to jump on board, and then you get the other people that are in the middle going, “Yeah, okay.” They may have started 6 months later. Now, we’re year and a half in and people are paying attention to what others are posting on our socials and sharing with each other. I just think that everybody wants some kind of treatment option. I think that with the start of Yorvipath, it really has helped get people excited to know that there will be treatment options for people moving forward.

Kerri Fitzgerald:

Yeah, absolutely. Has the treatment allowed people to reduce the volume of the supplementation that they’re taking in terms of calcium and potentially other things?

Patty Keating:

Oh yeah, for sure. Most people, I should say, that I have seen that have shared have they just go to the shot. I think that a lot of people that are women over 50 are probably taking a little calcium regularly whether they’re hypopara or not. They may take a little bit of that, but they’re not taking a therapeutic amount of calcium. It’s just what we do as women.

Kerri Fitzgerald:

Yeah, that’s great that there is an option for people should they choose it. Also that it was the patients who made it happen and got the FDA to see that this could be really impactful for this patient population. You mentioned there are a number of other treatments in the pipeline and different phases of clinical trials. What can you share about that and maybe your hopes for the future treatment options?

Patty Keating:

It’s very exciting because again, going back to 10 years ago, I was like, “Wow, what am I going to do?” I’m not like any other patient, I’m sure they are thinking the same thing. Now we have a treatment option on the table, and we have several others in the pipeline. I think the biggest thing is they’re going to have options. It’s almost like, or we’re hopeful, I should say, because it’s not FDA-approved yet, but we’re very hopeful that there’s going to be options. I think that with any medication, a long-term medication, just like diabetes, you might start on something but then you end up on something 5 years later and then you go back to the old thing another 5 years later. We never know, but the ability to have that option is going to be enormous.

We’re hoping that this year, 2026/2027, that we can potentially have 2 other treatment options presented to the FDA. One of them will be for ADH1 patients to start, which is a genetic form of the hypoparathyroidism. Then the other 1 finished its clinical trials and we’re just waiting to hear about that. Another exciting thing happening is that there’s another treatment option that would only be a once-a-week injection, which some people are going to find very much more interesting than potentially a daily. Then, we also have 1 that’s in the early phases, that’s a pill form.

I think there’s lots of excitement on the horizon for what could be. Of course, these things take a long time and for a patient, that’s tough; 10 years is a long time span when you are hoping every single day to feel better and to have a better quality of life. We do everything we can to push things along and be a part of what we can do to help make decisions a little bit easier…bringing the patient voice into it through a listening session that we did early on through the ELPFDD, through helping industry understand the patient voice so that they can bring it as well.

Kerri Fitzgerald:

I imagine for you, as an example, when you were diagnosed, and for many other people, it’s jarring enough to get this diagnosis, but then to be told, “Oh, there’s actually no specific treatment indicated for your condition.” What does that feel like?

Patty Keating:

Oh, man. Again, that’s why it was like, is this a life sentence? Then it became, is this a death sentence? Because there’s nothing we can do. I mean, for me personally, going on the standard of care, the conventional therapy to begin with…gosh, it was hard. It’s hard on your stomach. It’s hard on your bones, your muscles, and all of that for me. I hear that from other patients as well. At one time I described it as, “I just feel like every day when I wake up, I feel like I’m going to crack, like my body’s just going to crack.” It was really tough.

Kerri Fitzgerald:

I think it probably is an added layer where you don’t look sick most of the time. You may have a bad day, but you don’t look sick. That’s something we hear in these interviews that we do with people who have “invisible illnesses.” Other people around you may not understand that it’s impacting your day-to-day life.

Patty Keating:

It’s so complicated. They named it hypoparathyroidism because it’s behind the thyroid. Sometimes you want people not to pity you. They may give you a little grace if maybe you forgot something or your hands started cramping up in the middle of the meeting or something like that. You want people to know, but then on the other hand it’s like, do you really want them to know? Then, you say the words and they’re like, “Oh yeah, I got thyroid issues.” Then you’re like, “Oh boy, here we go. Got to explain it again.” It’s not the other person’s fault, that’s what they know, but sometimes it gets exhausting.

Kerri Fitzgerald:

It highlights how important it is, the work that you, your colleagues, and the Association are doing to advance education, awareness, and then advocate for this group. One of the ways you’re doing that is you recently launched a podcast called HypoPARA Unscripted. You have the gorgeous logo in your square there. The podcast brings together clinicians and patients living with the condition. What do you hope that listeners will get out of these episodes?

Patty Keating:

It’s very exciting. It’s our next step. We have, like I said, been to the FDA. We have done the conferences. This is just another layer that we’re going to put on top because we needed to cast that net even bigger to reach the clinicians and patients. We’ve gained a lot of patient followers from the different things that we’ve done because they didn’t know there was a patient advocacy team out there for this rare disease. It’s been nice to be able to do that and just to share the stories on not as structured platform like we would a conference. Being able to share on a less structured platform is great because it is unscripted. We don’t give anybody a script or anything. Lord knows you’ll hear a lot of my same words happening throughout there.

I’ve learned a lot about myself doing this. I’ve interviewed people my whole entire life and I find that people are fascinating listening to their stories. I thought, what a great platform to be able to just listen to. At the same time, they can share their stories with the world to help understand hypopara just that much more so that we can touch more clinicians so they’re more willing to look at the treatment options. We can touch more patients to help them feel potentially a little more secure in knowing about their disease but also being able to understand the treatment options that are coming out.

We’ve had 2 doctors so far that were just absolutely fantastic. We have patients coming up in the next 2 episodes. One is a group of 3 people that became fast friends because of hypopara. The other 1 is a wonderful author of books who had to put her career a little tiny bit on hold because of this. I’m curious and interested to talk to her about how she did that. With the brain fog that we have, how were you able to still continue to be an author and write these award-winning books with having hypoparathyroidism?

Kerri Fitzgerald:

Yeah. The brain fog particularly can be debilitating. People think, oh, you just forgot something, but no, it affects your ability to function at work, in the home, with your family.

Patty Keating:

Driving a car.

Kerri Fitzgerald:

Exactly.

Patty Keating:

I mean, I don’t think people understand that as much as they need to understand that. If you don’t mind, I want to elaborate on that a little bit more. I have a couple of examples, and one I’ve shared frequently on different venues here about driving the car, things that you normally do on a regular basis. Luckily, I was still remembering to drive the car, but what I couldn’t remember was where I was going. I literally was going to a friend’s house I’ve been to 100 times. I had to pull over because I could not bring to my mind where the heck I was and how I even got there when I drove that path a million times. A lot of times we go on autopilot when we get in there, your autopilot does not work well when you’re hypopara.

The other thing that I think is an important point about our quality of life is the social piece of it. Let me share an example. I went to a graduation, my niece had graduated years ago and it was early on when I was hypopara and I was doing a conventional therapy. During that, there was a high school friend there that their nephew was graduating as well and social media, “Oh, let’s make sure we get together and I can give you a hug, get a picture,” and all that.

We got there and we saw them and we took a picture. Then about 30 minutes later all of a sudden I was like, “Oh, we can’t forget we have to get the picture.” She looked at me and, at that moment, I could cry talking about it now. I felt like I had to cover up my 50-something-year-old self of the brain fog that happened in that moment. I had completely forgotten that we had already done this whole picture scene. Then I’d come up with an excuse, “Oh yeah, but I wanted to take it over here and, oh yeah, my brother’s here now, so let’s take it with him.” It’s just hard to deal with that kind of stuff in being hypopara, the brain fog and everything. It’s really tough. It’s tough on you mentally, emotionally, but hopefully with treatment options, people will be feeling a lot better.

Kerri Fitzgerald:

You having a platform where people can share their stories, and certainly that’s a mission that’s close to our heart at My Hero 360, educates people, listening to those 2 examples you gave be like, “Wow, okay, I understand the brain fog now.” It also offers community for people who are dealing with something similar or the same condition and be like, “Oh wow, I can totally relate to that.” I think that’s such a special outlet that you’ve created for people.

Patty Keating:

Yeah. It’s important to describe that to your doctor so they understand. I think that’s where we tend to feel dismissed a little bit when we say, “Oh, we got brain fog.” Well, who doesn’t lose their glasses, phone, and wallet? I swear I was going to get my husband a rug mat out there before he walks out the door and says, “Glasses, phone, and wallet.” He knows that, so I’m not sharing anything, any little secrets there, but we laugh about it every day because he goes in his head: glasses, phone, and wallet.

Kerri Fitzgerald:

Where can people listen to the podcast and also connect with you and the HypoPARA Association to learn more and maybe get involved?

Patty Keating:

The podcast, it’s called HypoPARA Unscripted and it’s on all your favorite platforms. It’s hosted through Podbean, shout out to all the different platforms! You shouldn’t have a problem finding it at HypoPARA Unscripted. Then to reach us, please visit our website at hypopara.org. We are under a little bit of construction with it right now. We did a reconstruction about 3 years ago and we started that process again this year. We’re really excited about what it should be, to really be able to support the patients. Certainly, you can always reach out to me at pkeating@hypopara.org if you have any questions for me personally.

Kerri Fitzgerald:

Awesome. Patty, we like to conclude our My Hero 360 interviews by asking everyone the same question. What would you tell your younger self knowing what you know now?

Patty Keating:

One of my sayings is always, “We’ll figure this out.” I’ve said it so often, I think my son says it a lot too because we will figure it out. I think sometimes in my younger self I was stressed about things. Saying that now I believe it, back then I might not have believed it as much. I would say believe in myself, my abilities and that I can get through things…We’ll figure it out.

Kerri Fitzgerald:

Absolutely. Patty, thank you so much for sharing your personal story as well as all the work you have done as the Executive Director of the HypoPARA Association. The work you’re doing to advance the field of research for hypoparathyroidism and the resources you’re offering individuals living with this condition are so important. We’re very grateful to have you here on My Hero 360 today. Thank you.

Patty Keating:

Oh, my goodness. I loved working with you over the last couple of weeks. Thank you so much for highlighting all the patients.

Connect with the HypoPARA Association:
https://www.hypopara.org/
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw
https://www.instagram.com/hypoparaassoc/
https://www.linkedin.com/company/hypoparathyroidism-association/

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.

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