Transcript
Speaker: Hi, I'm Sylvain Berthelot and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Katie Gillick, and we're going to talk about hypoparathyroidism. also known as hypopara.
Speaker: Hi, Katie. Thank you for joining me today. How are you doing? I'm doing well, Sylvain. Thank you so much for hosting me today. I'm so excited to be here and to be your guest today. Well, me too.
Speaker: We had a great discussion when we prepared for the podcast. I have ah plenty of questions to ask you, so I'm really excited about it. But you know, I love starting with a song. So which song did you choose and why?
Speaker: It's a great question. I would say that one song that had particular meaning to me, particularly when I was going through a lot with my health journey was called The Cure.
Speaker: by Little Mix. that while the nature of the song might not obviously relate to anything. that I was going through and in terms of being ill or... anything like that.
Speaker: The lyrics, and particularly the refrain. carry particular meaning. The refrain. talked a lot about feeling lost, hurt. left out.
Speaker: And. kind of just feeling like you're isolated in the journey that you're on. And then... It takes a turn. to describe what it feels like.
Speaker: To be okay now. And I'm looking forward to having more of a discussion about. what that looks like in my journey. Yeah, me too. Is that something that...
Speaker: you feel describes how you felt at some point. Yes, very much so. I would say. That. throughout the course of my journey as a patient.
Speaker: Living with. thyroid cancer and later with a rare condition called hypoparathyroidism. there were many points in my journey where I was. almost solely responsible for ensuring that I would continue to have a life to live.
Speaker: And. I think often about how fortunate I am that as I went along that journey and made decisions like Making sure that. I was well prepared to address the issues that I was facing.
Speaker: that I would continue to have. success in various ways and the way that the song describes feeling kind of lucked out.
Speaker: lost, left out. far gone, etc. And now being okay really describes how. my journey resulted and I'm really grateful for that. I'm sure we'll come back to that, because that's something I'm...
Speaker: I want to explore more. I think it makes sense to start with the beginning for you. So you talked about cancer and then hypopara. So could you share with us how your journey started?
Speaker: Absolutely. So my journey with rare disease started with a thyroid cancer diagnosis when I was 23 years old. And. as a result of two surgeries to remove my thyroid, I ended up with a rare... rare endocrine condition called hypoparathyroidism.
Speaker: We call it hypopara for short. That was the beginning of my journey with rare disease. Being that I was in my. young to mid -20s. and acquiring not one, but two diagnoses to that extent.
Speaker: I really was feeling lost. and had to do a lot of research and self -education to come into an understanding of what it looked like. to live with. Those. Two conditions.
Speaker: one of which was considered quite rare. hypoparathartism. is known to occur in in a permanent sense in less than two percent of cases when it occurs as a post -surgical condition so just to give you a sense for how rare It is.
Speaker: That's a helpful statistic to keep in mind. There are other forms of hypopara. there There are genetic forms. There's autoimmune forms. There are idiopathic forms, which means we don't really know what the origin is.
Speaker: But post -surgical hypopara makes up approximately 75 % of hypopara patients in general. um So that actually is the majority. of patients living with the condition.
Speaker: But I would come to find out. as my journey unfolded. what it looked like to be a rare disease patient. And. what it looked like to connect with others with my condition, and then also to exist in this broader ecosystem of rare patients in general.
Speaker: kind of how it felt to connect. along the way and explore the the benefits of being able to connect with others who could understand what it felt like.
Speaker: and what was needed. to accomplish success within that. community. It's good to hear that you have the community. and like can That's something that rare disease patients mention a lot.
Speaker: But I feel like there's a long journey in between, so I'm sure we'll explore that more. Could you share a bit more about what your symptoms are.
Speaker: And also, how did you realize that you... have hypoparaxia. So... The journey to diagnosis for me. fortunately was relatively short.
Speaker: That is not the case for a lot of hypoperipatients, particularly those who are not post -surgical. In my case, after they... perform the second of two surgeries to remove my thyroid. I remained in the hospital for several days after the fact because I was having issues. with serum calcium levels.
Speaker: And the way that hypoparathyroidism works is it occurs when there are simultaneously low levels of serum calcium and low levels of a hormone called parathyroid hormone or PTH. in the blood And when you have low levels of both,
Speaker: you end up with an array of symptoms Those symptoms include Tingling, numbness, muscle spasms. in more severe cases and long -term cases. kidney disease and dysfunction. calcium deposits in various soft tissues in the body, even cataracts.
Speaker: And some of the most complained about symptoms. from myself and just kind of across the hypopara community tends to be severe fatigue. and brain fog.
Speaker: And to give you a sense for what brain fog. looks like. I know it's kind, it tends to be kind of an elusive. symptom to describe. and Unless you've experienced it, it can be very frustrating.
Speaker: to relate to. To give you a little bit of a sense of what that looked like in me, particularly. When I was in the process of. learning. how to treat my diagnosis and exploring options for the best treatments for my diagnosis.
Speaker: I remember a time when I would. get in the car and again i was in my mid -20s here. I would get in the car. attempt to drive to Walmart or Target.
Speaker: which I had been to countless times and was within 10 or 15 minutes of my home. And I would. realized as I was one turn away out of my driveway that I forgot which one I was going to. I forgot.
Speaker: what item I needed. at either. And I forgot what the next turn was around. the next road to get to it And. When I would eventually get there.
Speaker: I could recall looking at the different shelves exploring the aisles for the item or two or three, whatever it was that I went to get. And.
Speaker: Really being very overwhelmed by. all of the different items in the store. And. not really being able to filter appropriately or process what I was looking at.
Speaker: Those were the moments when I was scared. I was frustrated. I was coming into my own realization of how severe. this symptom was and What is particularly frustrating about living with a condition like this that has brain fog as a component.
Speaker: is You can appear mostly fine. to a lot of people. You can appear just a little off. You can appear tired. You could appear like maybe you just didn't get enough sleep or you're stressed or you're anxious. It's a lot of excuses.
Speaker: for why this symptom could be presenting. But in the case of hypopara, It has a biological root. And it is only. appropriately corrected.
Speaker: Bye. appropriate treatment. And that was something that I had to experience for myself in order to see. some positive outcomes and benefits. And as as you can imagine,
Speaker: This symptom was about much more than. just going to the store and not really being able to filter information that you're looking at on a shelf, right? you know Eventually, I did find the bread. that I went to go get at the grocery store. or the toothpaste that I knew I needed, but couldn't. really process when I was looking right at it.
Speaker: This was about how it affected my ability to relate to people. I can recall having conversations with close friends and family and staring right through them. and not remembering or being able to process the information they were Saying. a moment earlier.
Speaker: I used to have to ask them to repeat themselves. I was embarrassed. I had people think that I didn't care about them. because it appeared like I just wasn't paying attention.
Speaker: I... thankfully had a series of some very supportive employers who worked with me. when I needed to. adjust and whatnot for my condition.
Speaker: but it affected me at work as well. and my ability to do tasks, it took me longer. to accomplish things. And I used to have to implement safeguards. for myself that. Not everybody understood.
Speaker: such as spreadsheets and various types of notations, calendars, etc. to make sure that I wouldn't lose track of something important. Those are just some of the ways that that symptom appears. for me. and for a lot of other patients. And it's one that I talk about often because I think it's worth raising a lot of awareness of so that people understand how severe.
Speaker: It can. present particularly when There is not an excuse. Another excuse that would characterize things like this, for example, if you're a woman going through menopause.
Speaker: something like this symptom is often used as an excuse for menopause. clearly that's not an excuse for somebody in their 20s. Yeah, and as you said, it sounds like it's very difficult to actually describe what it's like. so unless you've experienced it yourself, it' it's difficult to relate to it.
Speaker: But early on in this conversation, you alluded... to having to advocate for yourself. How do you do that when you also experience brain fog?
Speaker: And you might lose track of what you want to say, for example. I imagine mid -sentence, maybe. That. is a fantastic question. and one that is so worth talking about.
Speaker: I have pondered that question often. And. Quite frankly, I would say. that it In my case, it was a mix of sheer.
Speaker: force of will. I don't even know how to describe what I did. I think, quite frankly. That. I was running on a lot of adrenaline and panic.
Speaker: And anxiety and and whatnot. while I was experiencing this. and That sheer. Will. to persist. And to create a life for myself that had meaning.
Speaker: pushed me Kind of, I wouldn't say through brain fog, but I would say. kind of every which way around it. To the point where. I made whatever accommodations I could could muster.
Speaker: to get what I needed done. And I guess what What I would say is I want to be careful with that. with that statement because I don't mean to say that you can just push through brain fog you can just overcome it because that's not what i did What I would say is.
Speaker: I was compensating. However, I could manage to think of. to try to make any progress I could while living with this horrible symptom. And what that looked like in my case was I was drowning myself in caffeine.
Speaker: Whatever coffee I could. muster to try to get ah any type of cognitive edge. I was killing myself with coffee if I had to. I was preparing days, weeks or months in advance for important things which again was something that might have taken me an hour to do might have taken me a week and that's not an exact number i'm just trying to describe what would happen. So for example, if I had doctor's appointments coming up.
Speaker: I would sit down days in advance. And. research and read. prepare and write lists and keep symptom logs. Because there was simply no way I was going to show up to these appointments and remember anything that I had to ask.
Speaker: or remember what happened a day ago or a moment ago so there was a lot of in the moment preparation and data logging. when I could have any type of, one for example, maybe when I was feeling a little bit cognitively better.
Speaker: I would do that type of work so that when I. wasn't feeling well. I would still have a safeguard. to when i So that I would show up to. a job.
Speaker: at and an important meeting. prepared I would show up to a doctor's appointment prepared. So I would say there was a ton of prep work that I was doing to try to. help myself however I could. Importantly.
Speaker: There was. also plenty of occasions where There was simply no way I could do any prep work because I was so fatigued. And my brain was not working at all. And those were not the moments where I was able to overcome. was Those were the moments where I was lying horizontal in bed.
Speaker: Absolutely. passed out after a long day at work. And I could sleep for three hours and then wake up, try to eat something. And then I would go back to bed and sleep another eight or nine and have trouble getting up the next day.
Speaker: There was simply a lot of accommodating. And. working around symptoms that I did to try to prepare myself to advocate in the moments when I really had to.
Speaker: When you talked earlier about feeling lost Alone is this. part of what contributed to that feeling. Absolutely.
Speaker: there was quite a sense of losing myself. when I was diagnosed. It was kind of a simultaneous journey. of.
Speaker: coping. with the loss of self. while I was finding myself again. I had to reach. Into parts of me that I didn't know were there to persist.
Speaker: And. The sense of loss. pertained to I'm trying to think of how to describe it. And. Perhaps there isn't a good way. But I guess the closest I could come.
Speaker: would be When your brain doesn't work. And when you're too tired. To go out and do things right if it was. I guess, and I'll speak for myself here. I could deal with a little bit of tingling and numbness. It would be annoying. And you know I would seek treatment for that and whatnot. But if my brain worked and I had energy.
Speaker: they there would be an internal motivation for me in my case. that. could kind of maybe put some of the symptoms to the side. There was nothing. That.
Speaker: could have replaced. my energy, my my cognition. Those were the things to me that made me who I was and allowed me to feel.
Speaker: successful. productive, motivated. and simply you know a good person. I used to pride myself in having enough inner I guess strength and generosity to give to other people.
Speaker: And quite frankly, I didn't have it anymore. I had to take care of myself because i didn't have enough in reserves to even really even do that on most days. I needed in fact to rely on other people to try to help.
Speaker: me manage some of the symptoms that I was having doctors, my family. I was so busy trying to make safeguards for myself so that I could function. i really couldn't be a good friend.
Speaker: or a good Partner a good anything to any anyone. And. That was the hardest hit for me. That's why I felt lost and hurt and left out and isolated.
Speaker: I saw. Friendships changed. I saw my relationship with. myself changed. And. Those were major motivators for me as I continued.
Speaker: to Push. for something better than that. for my life. It sounds... Like you became... I hope you don't mind me using that word, but like you became selfish because you had to look after yourself. and that's almost the only thing you could focus on.
Speaker: within those period of times where Your brain was functioning. So I can imagine how it can affect any kind of relationship, especially as that wasn't you beforehand.
Speaker: But... Did people at the time understand that... you were going through that. Was it difficult for you to explain? Yes.
Speaker: And no, I don't mind you using the word selfish because while it has a negative connotation. I do believe that. In this context, it is accurate in describing how I felt.
Speaker: That in and of itself was hard because. Nobody wants to be a selfish person. And I i felt like I had to be. in a sense. to... try to push myself to recover.
Speaker: And my ability to give to others was very limited in that context. And I think there were. many people who did understand that. And.
Speaker: I appreciate that very much. Those are. people that I hold very near and dear because. They were few. Those that did are are so meaningful to me and so selfless.
Speaker: to have surrounded me at that time. my I have very good relationships with my family and friends. who saw the change in me and understood what the difference was.
Speaker: I have particularly good relationships with. I guess I would say one particular friend who sat down. with me routinely and mind you this was kind of while the world was shutting down with COVID. And I remember going to lunches and dinners and brunches with his friends.
Speaker: you know repeatedly and you know over the course of many many months as i was going through diagnosis and the aftermath of it. and And she would sit there and ask me. to explain.
Speaker: what I was going through. again and again. And. told me over and over this is you are not a burden because that's like one of my biggest fears is like I do not want to be a burden to anyone. And.
Speaker: This friend made me feel like a person. when I didn't feel Like. I had much self worth at all. quite frankly, because of what I was living with. and having that type of relationship.
Speaker: with somebody who knew I wasn't okay, who asked. And. Made me. sit there and explain it so that they could understand and they could support me and they could follow up and they could ask and they could remember when I couldn't remember.
Speaker: It was absolutely. priceless. And that's a relationship that I i treasure. lifelong. There's been many instances of people. in my life like that who have been so generous and selfless and part of my task was remembering to be open to that.
Speaker: be open to those types of relationships, I tend to be a person that carries things and carries pain privately. I'm not always good at. letting other people help take care of me.
Speaker: Probably the truest example. of a true selfless and dedicated partner is my fiance who joined a natural history study with me. He is a healthy.
Speaker: control. while i am the quote unhealthy patient right in this this natural history study And he goes through all of the same. cognitive,
Speaker: laboratory. etc. testing that I do. as a healthy patient. so that he can contribute to the data needed. for long -term studies on patients living with my condition. so There are so many examples.
Speaker: of love and support. that can exist even while you're living with. chronic illness and and rare disease. That was something beautiful that I take away from this experience and something that this song.
Speaker: reminds me of too. that's nice, very nice So, how did you get out of those symptoms what was the Exit route, you seem... much better and you talk about all of this in the past so i imagine that there was something that happened at some point Absolutely. That's the million dollar question, right? Is how do you.
Speaker: overcome this. What I say often, what I talk about. my journey. first of all, is that I'm an outlier. And I am so grateful.
Speaker: to be able to be an example of what can happen when patients, and doctors. and pharma. and the government work together. to accomplish success.
Speaker: in a setting of rare disease. I joined a phase three. clinical trial. Which. was to treat hypopara. When I was really on the cusp of.
Speaker: kind of a turning point in my rare disease diagnosis. and journey. I met a wonderful. Doctor. who made all the difference for me. This physician is the same one that runs this natural history study.
Speaker: She encouraged me when I was evaluating options about what to do. I was right at the edge of starting to experience some. significant kidney dysfunction as a result of the treatment for hypopara. So the standard of care treatment.
Speaker: up to this point for hypopara has been replacement with calcium supplements, and active vitamin D and sometimes magnesium. which is needed for calcium absorption The negative aspects of that treatment is that you are still missing hormone.
Speaker: So if you can imagine a condition like diabetes. right think about an insulin dependent person living with diabetes. And now imagine just telling them to take sugar pills. and kind of guess.
Speaker: based upon their symptoms, what their lab values are, where their blood sugar stands, and if they're not feeling well. Get in the car, drive yourself or have somebody else drive you to the lab, and then wait for hours and hours.
Speaker: until you get a result and then maybe we'll adjust your medication or you know Maybe just go to the emergency room if you don't feel well and see what they tell you and then maybe have them treat you like... your drug seeking because you're looking for help, right? That's actually what.
Speaker: our Hypopara community goes through. right now because leading up to this point We had not. had a hormone replacement specifically.
Speaker: indicated for hypoparathyroidism. while there were other treatments that had been used kind of in that context leading up to that point. It wasn't.
Speaker: a standard of care or widely used option. And. There is nothing that replaces. A hormone like a hormone. Quite frankly. The other method was a Band -Aid for symptoms.
Speaker: In my case, when I joined this clinical trial It was for. a PTH analog. drug. And. It was a double -blind placebo study.
Speaker: We did not officially know if I was receiving the therapy or not. but I was able to come off of all of my calcium. vitamin d and magnesium supplements inside of one month's time Which was an incredible response And.
Speaker: Since that time, I've worked in collaboration with my physician to titrate my doses. So that we were accounting for a balance. Of. What? my calcium. lab values we're saying and taking into account what my symptoms were telling us because One of the other frustrating aspects of living with hypopara is that Frustratingly, many times our patients lab values Do not accurately.
Speaker: Reflect. what their symptoms are like. So you might have a perfect calcium result. and still have brain fog fatigue tingling numbness etc it looks different depending on the patient um So it's important to work with physicians.
Speaker: who understand. that type of complex so that they can adjust. your medication. and your supplements or whatever the regimen is that you're on accordingly And. At the pinnacle of. kind of my advocacy journey.
Speaker: was when Our patient organization, which is called the Hypoparathyroidism Association. I'm now a volunteer board member of this association. It was when we hosted an EL. externally led PFDD, Patient Focused Drug Development Forum.
Speaker: which was an opportunity for a panel of patients to speak to the FDA. in order to have treatments. past. and come to market. We were allowed at the time to Name the treatment. that we were on. so I was very fortunate to be able to be one of those patient panelists.
Speaker: and very proud to be able to speak to the FDA and share my. experience. on this therapy One of the words that I use frequently. what I'm advocating in terms of being.
Speaker: this being so important is partnership. And. how I have a fantastic partnership with my physician. There was no moment like the one where I was able to stand beside my Doctor.
Speaker: at that PFDD meeting. And. have us both advocate for the same goal. I am so proud and grateful to say that that treatment.
Speaker: that I contributed to in clinical trials did come to market and is now commercially available for hypoperipatients. And I still enjoy success on this treatment.
Speaker: And I now work as a patient advocate. Four. one of the specialty pharmacies. It's called Orsini. that dispenses this medication.
Speaker: to our patients That is... why I enjoy being able to advocate for what it looks like. to be a successful outcome when patients.
Speaker: Doctors. Pharma. and the government come together to create positive outcomes for patients. That's absolute music to my ears. i As you know, I work in the clinical trials industry and...
Speaker: I don't want to put a negative spin on on what you just said, but it's not always that you hear such positive stories of everyone working together. And so that's absolutely incredible to hear that.
Speaker: I'm very curious about... the PFTD meeting. So for people who don't know clinical trials, once you get to phase 3... You've already done a lot of experimentation and... tests to make sure that people react well to the treatment, that it's positive. The phase three is the last step.
Speaker: before a treatment is submitted to the FDA to be reviewed and so on. From what I know of clinical trials, you don't necessarily need to advocate for a treatment to be released. The the results of the clinical trials should speak.
Speaker: by themselves and be valued enough. by the FDA to say, yes, a seal of approval, you can go to market. So what was that? PFTD meeting for? Do you know why it was necessary?
Speaker: Excellent question. So. The PFDD meeting was held to accomplish kind of multifaceted goals. so One of the goals was to bring treatments to market.
Speaker: That was, of course. one of the outcomes that we were hoping for and we succeeded with that. And we are very fortunate that. There are multiple treatments in the pipeline from various pharma companies.
Speaker: that are working to understand. and contribute great benefit. to our patient community. So we only have one FDA approved option today. but there are many more.
Speaker: that we anticipate. coming. in Really, then... the near -term future which is Just... such a blessing for our patients. However,
Speaker: One of the other goals. at this point in time. And this meeting was held in March, 2024. was to continue to raise awareness about What hypopara even is?
Speaker: And. also simply how bad it is. We learned. at the meeting that There was a lot more to do. in that context. And.
Speaker: there are still members of our community, physicians. I guess kind of just members of the general public, the government. kind of just across the board that I guess maybe.
Speaker: Benefit. from having more of an understanding of what hypopara means and how it impacts our patients and how those symptoms show up.
Speaker: day to day. And that example that I provided. Previously, where I was getting in the car and trying to find Walmart and Target and I couldn't find the bread on the shelf. Those are the examples that this PFDD meeting was designed to draw out.
Speaker: And we had patients. that described failed marriages. addiction problems. not being able to pick up their children. because they had such severe...
Speaker: Weakness from living with this condition. being in a store and not being able to navigate their way through things or falling and having difficulty getting up there's there's tons of different examples that These patients described, we also had young people who were in school or who maybe were diagnosed when they were a child and had to go through school. they weren't believed when they had hypopara because
Speaker: their school system didn't understand how to support them. And they thought that maybe they were just looking for attention. and weren' weren't you know willing to focus in class. and they just needed extra help and they were looking for for people to Pay attention to them. There's there's all different ways.
Speaker: that this condition shows up for people depending on when they were diagnosed. what their family systems look like, what their school systems look like. their employers look like.
Speaker: Their comorbidities are. And. really this PFDD was able to put that on display. And. raise awareness of how Our patients have to live.
Speaker: And. One of the comments that kind of came out of that was. The FDA is saying are these. Patients just the worst ones. did we just kind of sample X number of patients that all have the worst possible outcomes. And the answer was no, this is all of us. This is some version of all of us.
Speaker: and it's important that that's known. And that our. clinically driven Therapies. address that. That's quite ah an interesting question from the FDA. Obviously, they want unbiased data. I completely understand.
Speaker: So you talked about treatment. This treatment sounds like it was life -changing for you. But... I want to go back to something you said, because you compared treating hypopara. with treating diabetes.
Speaker: which is not easy to treat because it's not that you take a pill every day and... and then you're fine throughout the day until you take your next period in in the morning So is it similar for you? Is it difficult to manage your treatment? Do you have to balance levels of hormones, calcium and so on?
Speaker: I would say hypopara treatment is nuanced. in general. With standard of care treatment, When. It was very. It was annoying. That's the word I'm going to use. It was annoying.
Speaker: there's much more that I could say about it. It was annoying and it was frequent. are the two words that I'll start with. And that's because. There's kind of a maximum amount of calcium that your body can absorb at one time. So let's say there's a patient that requires, you know, a thousand milligrams versus 5 ,000 milligrams of calcium, whatever whatever that might look like. Right. your body can only absorb so much at one time. And so the way that
Speaker: is frequently managed and again I'm not a clinician so this is not a clinical opinion but from my patient experience what what tends to happen is that you have to disperse your Supplements across the course of a day.
Speaker: or sometimes even a night. Because... Not everybody can go eight hours without. taking calcium supplements without having severe consequences so calcium for example interferes with other medications like iron. like thyroid hormone, guess what a lot of our patients had to deal with?
Speaker: thyroidectomies Guess what that means? Many of us take... thyroid hormone. so for example, you have to space your calcium four hours apart from your thyroid hormone. So that requires.
Speaker: our patients to take calcium multiple times. throughout the day. Space it out. from other medications that might be part of your regimen. And. Well, that's physically annoying to do, and that's kind of where you get annoying from.
Speaker: It's also psychologically demanding. The reason for that is because you are constantly worried about when do I have to take my next dose. Do I have to eat with it? Am I going to have to take it in the middle of you know my kid's concert? or in the middle of my softball game or In the middle of dinner, when I don't want to want to be digging that if I'm out to dinner, like, and those are kind of like loose examples, but. Just to give you a sense from the practical nature.
Speaker: You never get to forget. that you have hypopara. that you have medical needs that You have to do something. to keep yourself. feeling well.
Speaker: And the the kicker is that. These calcium supplements while they kept us alive. It didn't keep us well. It. put a lot of us in the hospital. It was contributing to long -term negative outcomes like kidney dysfunction.
Speaker: like calcium deposits in the body because Many of our patients require such high doses of calcium supplements. That. It was. pushing us over what.
Speaker: was normal, right? If you think about taking a calcium pill, you know, my mom does that for bone health, right? It's not like that for our community. We need much more than that. to feel well or and to stay alive. and it never accounted for the missing hormone. So there are patients, to be fair,
Speaker: that can manage their hypopara well enough. with calcium supplements. and and vitamin D. but there is a large majority of us that Really?
Speaker: cannot. And that also depends on. how severe your condition is right there's ranges so The parathyroid glands are these four little bean -sized glands that sit kind of around the thyroid.
Speaker: Some people have more than four, some people have less than four, but generally speaking, there's about four of them. There's different ways in which the condition can present. but Some people make more parathyroid hormones and people make less parathyroid hormone, depending on the nature of your condition.
Speaker: Some people... Ken. survive with taking less calcium or they could survive with taking less parathyroid hormone it really just depends But it's important that... the physician that you're partnering with understands.
Speaker: your condition. and what your needs are. and is able to adjust. And the other comment I guess I would make is that the condition tends to or may change over the course of your life. And so.
Speaker: for women in particular and the vast majority of us with living with this condition are women It makes a difference whether you're diagnosed when you're a child. and you're going through hormonal changes like puberty. or if you're diagnosed as a young woman of childbearing age, and then you're going to have children, or if you're diagnosed when you're going through menopause, there's so many different things.
Speaker: not just hormonal changes, but if you're sick. if you're If you're sweating a lot because you're physically active. if there's any type of intervening factor as i say that impacts your body's ability to process calcium.
Speaker: Any of those things can contribute to what we call a calcium crash. And it's important that your physician understands. You? your body, your comorbidities, your lifestyle.
Speaker: and kind of where you're at in your health journey so that they can help you adjust. well when you're living with this. condition. And it sounds like it's very important to be able to speak for yourself.
Speaker: and explain all of this to a clinician, which is not necessarily easy. You need to understand yourself very well, your symptoms very well to be able to explain that to someone else. So I can imagine that...
Speaker: As a child, that must be very, very tough. Yes. for our pediatric patients living with hypopara right they can explain it in their own words But... There is a caregiver burden.
Speaker: that's required in those settings so that you know, your your parents, your grandparents, your aunts and uncles, whomever it is that is primarily responsible for helping um to take care of you.
Speaker: you're that you're asking the right questions that you're keeping symptom logs that when you go to the doctor you bring your child to the doctor You're helping them. to express for themselves. what it feels like.
Speaker: in their experience. to live with this condition And the PFDD was one. example of how we were able to give that opportunity to some of our youth. and At the Hypopara Association, we're we're always looking for ways to help bring our patients' voices forward, including those of our youth.
Speaker: Amazing. And I love, I must say, I love how you speak for the community. I know you've shared your story today, but... I feel like the community is behind you and that you really care for them. I really like that.
Speaker: Thank you. I do. And it's. It's truly my honor. to be in the position where I am now. I think. Often.
Speaker: of what it felt like to be sitting in my doctor's office. And. Not just being but being made to feel like. I am. Just one voice.
Speaker: I'm just one person. I'm just a patient. And I never forgot that. And. I was determined. In every way. to make my life matter. And so my journey.
Speaker: through living with these conditions, the thyroid cancer, the hypopara in particular. was very much about self -worth. And. As I said earlier, I'm a person that hates to feel like a bother, hates to feel like a burden.
Speaker: feels bad when I'm asking. somebody to care. about me or something that matters to me. I just don't like the feeling of asking. for somebody to pay attention to me It's not really in my nature.
Speaker: And. There was a lot of. overcoming of that that I had to do. So that when I went into my doctor's office and when I started advocating for myself and when I went to the FDA to speak on my own behalf.
Speaker: And now in my job. you know, working for Arseni and advocating for our patients. I can hold myself up knowing that. i built this i built up to the point where Within myself, I have self -meaning and my voice matters and my story matters. and It doesn't just matter because I'm a person living with this condition, but because
Speaker: my voice is joined by so many others in our community that are not in the position that i'm in or maybe are struggling more than me and i think all the time What if I was somebody that was in the hospital every week?
Speaker: on an iv drip of Kalsim because I don't have the ability. My health is such such that I can't Speak. anymore. And I need somebody else. to do that for me. I want to be that somebody else that is here.
Speaker: raising up our community so that they feel like they have the right support and they feel like they have hope. Well, they're lucky to have you. that's That's amazing. Thank you. I have one last question for you.
Speaker: which I love asking everyone, what's your happy place? a place where you feel at peace. This is the hardest one and you've saved it for last. Yes.
Speaker: It's a really great question. It wasn't one that I... was prepared to answer. Thinking about it now. Honestly, I would say That.
Speaker: My happy place. Is anywhere that I feel. I have meaning and I'm making a positive change and a positive impact. I don't have a single place. I don't have.
Speaker: a single moment. I have. a life that I am trying to create that I can look back on one day and feel proud of. And. I guess that wouldn't really be a place so much.
Speaker: But i I think of a place as a little bit more abstract in my. In my case, And. If I'm able to someday look back on. My contributions.
Speaker: to other people's lives and feel proud that I think. I will have. Done what I was put on earth to do One of my final thoughts. that I always say when I'm advocating.
Speaker: is That. My goal. And if there is a goal that I can encourage. anybody working with rare disease patients or chronically ill patients or anyone to anchor to is that If you can make your patients feel.
Speaker: Heard. Understood. and believed. Those three things. then you have done them a great service. And that's what I hope. to contribute to the Hypopare community.
Speaker: Wow. I can't add anything to it. It's it's amazing. And... I know I asked for a place, but it doesn't have to be a place. So you're you're excused. Thank you. I really tried. I know you did.
Speaker: It's been so nice Talking to you. I've seen it with... a lot of my guests actually, where the journey was very, very challenging to start with.
Speaker: But then... It feels like there's this... inner strength that maybe you had before, maybe you didn't know you had before, but that...
Speaker: has come Maybe going through that journey... and and then you seem to be carrying on your shoulders. much more than just your own Advocacy is just the community community that that's...
Speaker: you're within and that you you really want to represent. So it's amazing. I really like hearing what you're what you're saying, what you're doing. Thank you so much. It's it's my honor to.
Speaker: have this opportunity to be able to speak. about my story and about my community's journey. And. I hope that I will.
Speaker: continued to be able to do that for a long time and I'm just so grateful. that you've asked me to join you and for all of your thoughtful and insightful questions.
Speaker: This has been such a meaningful. conversation to me and so thank you so so very much It was an absolute pleasure. Thank you.
