Sarc Fighter: Living with Sarcoidosis and other rare diseases
Health & Fitness:Medicine
Angelica Gauptman's grandmother died from complications of sarcoidosis. Angelica is trying to figure out why. She believes it had something do with the combination of Vitamin D and Prednisone. To be clear there is no clinical evidence that proves a link. Angelica is a high school senior with more than your average get up and go. She has undertaken a survey of Sarc patients, and has gotten the attention of some top level researchers. Hear her story, and the heartbreaking way her grandmother passed in this edition of the Sarc Fighter Podcast.
Show Notes
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
email Angelica agauptman@gmail.com
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
Remember these hashtags for April! #WhatIsSarcoidosis #MakeItVisible
Here is a link to all the activities for April ! https://www.stopsarcoidosis.org/awareness-2022
Learn about the clinical trial from Novartis: https://bit.ly/3o9LXKk
Universal Barriers Podcast: https://www.stopsarcoidosis.org/sarc-fighter-podcast/
More on Universal Barriers https://www.stopsarcoidosis.org/events/universal-barriers-in-dealing-with-a-chronic-disease-a-sarcoidosis-perspective/
Ignore No More https://www.stopsarcoidosis.org/ignore-no-more-foundation-for-sarcoidosis-research-launches-african-american-women-sarcoidosis-campaign/
Sarcoidosis Awareness Film: https://www.purpledocumentary.com/
Nourish by Lindsey: https://www.nourishbylindsey.com/
Dr. Jinny Tavee's book, The Last Day of Suffering: https://www.amazon.com/Last-Day-Suffering-Health-Happiness/dp/0615542751
Read about the patient trial with aTyr 1923 https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-positive-data-phase-1b2a-clinical-trial
Also -- Note that investors also believe in the promise of aTyr 1923: https://investors.atyrpharma.com/news-releases/news-release-details/atyr-pharma-announces-closing-863-million-public-offering
Yale University and sarcoidosis skin treatment | Dr. William Damsky: https://news.yale.edu/2018/12/26/yale-experts-treat-severe-disfiguring-sarcoidosis-novel-therapy
Stanford University Clinical trial | Dr. Mathew Baker: https://med.stanford.edu/sarcoidosis/clinical-trial.html
Bonus Episode on COVID-19 and Sarcoidosis https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-and-covid-19-presented-by-the-foundation-for-sarcoidosis-research/
Bonus Episode Sarcoidosis and Prednisone: https://beatsarc.podbean.com/e/bonus-episode-sarcoidosis-town-hall-dealing-with-prednisone-presented-by-the-foundation-for-sarcoidosis-research/
MORE FROM JOHN
Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/
Watch the Prednisone Town Hall on YouTube https://youtu.be/dNwbcBIyQhE
More on aTyr Pharma: https://www.atyrpharma.com/
Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser!
If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier
The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E
My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/
email me carlinagency@gmail.com
The following is a web generated transcript from my interview with Angelica Gauptman.I'm sorry for typos and misspellings.
Welcome back to the Sarc Fighter podcast. And joining me now is Angelica Galtman • • in California. Angelica, welcome. You're just across the bridge from San Francisco.
Yes. Thank you. I am. Yes.
All right. So that you are in Marin County, and you were just telling me that, it's often foggy in San Francisco, but it's always beautiful in Marin County.
Yes. As soon as you kind of cross the middle of the Golden Gate Bridge, it's like a wall. • • It's kind of like the Marinas, the heavens, and San Francisco the opposite. It's very funny. Always very funny to drive across the bridge.
Got it. Okay. Well, now, um, you are a high school student applying, to colleges. But we were just talking before we began recording. You are looking to go to some fairly impressive colleges. Where have you applied?
I've applied to a lot of the IVs, Stanford, Harvard, UPenn, Columbia, um, and a lot of the UCS. UCLA is definitely my top choice. So, yeah, I guess they are, um, • pretty hard to get into, but we'll see.
Yeah, well, those are high levels, but • • you obviously have the grades in the background and so forth to handle that sort of thing.
Possibly. I don't know what they're looking for, so I have no idea, but hopefully something will get me there.
Let's talk a little bit about your sarcoidosis story. And when I say yours, I mean your grandmother's. So your grandmother died from complications related to sarcoidosis. Is that the best way to put it?
Yes, I'd say so, yeah.
All right. And you are trying to figure out if there's a connection between prednisone and vitamin • • • D, • which, um, could be very controversial. There are so many places to start here, but let's just jump in with your grandmother's story. Um, when was she diagnosed with prednisone?
Um, two, 2007. She was diagnosed with pulmonary circuit two, 2007 and then pregnant on, I believe, in two 2009.
Okay. And she took prednisone for quite a long time.
Up until two 2017. Okay. Did she pass IN 2017?
20 17.
Took it all the way through?
Yeah, all the way through. Do you know what levels of, uh, doses she was • • • taking?
Do you know what I think it was? Two 200, but I will need to • • • • check.
Wow. Okay. That would be a lot. Yes.
She was on a lot of it.
A lot of PREDNISONE. All right, so she was also taking was she prescribed vitamin D or did she just take vitamin D?
Um, at the time, they were prescribing her vitamin D supplements. But now that I look into her case • • file, she, um, was over producing vitamin D naturally, as a lot of pulmonary circulations patients do. It just didn't come up on the scans because the vitamin D that she was producing was actually in an inactive • • state. So it didn't come up on the scans that they did. They had to do a scan for inactive vitamin D to find it, but they didn't do that. So they just prescribed her more vitamin D supplements instead of doing the second • • scan.
Got it. And what eventually led to her death, according to your hypothesis • • • then? • • • •
So, • • • • um, I think that the overabundance of vitamin D that was in her system, • • • um, um, with the over, like, immense amount of predisone that she was • • taking led to the hemorrhage that she had. So the hemorrhage was an, um, internal bleeding. It was a really big part of it. A, um, really big bruise on her abdomen. And she developed that about a week or • • • • so after, um, they up her credit zone a little • • bit because they had been taking it down slowly. But they upped it again. And once they upped it, she, um, kind of developed that bruise. And that's what we went to the hospital • • for. And, uh, that's what led to, um, her kidney failure and her untimely death. Um, so I believe that the prednisone and vitamin D are what caused the hemorrhage or the bruise. And that's what caused her to pass away.
Now you're taking a course where you look into correlations, causations, that sort of thing. What is it?
It's AP research.
And so you started looking at other patients to • • see if your grandmother was not the only one. Tell us why you thought that and what you found.
So, um, in the class, we are taught to, uh, create our own project. And it was supposed to be a gap in the knowledge that is there today. And so this, to me was a gap in the knowledge because nobody. I talked to researchers at Stanford, UCSF that had, um, been researching, especially pulmonary circuit oysters for years. And they had never come across or thought of anything like this. And there were no real scholarly articles out there about this or scholarly work. So this, um, was my gap. And in the class we're supposed to create our own methodology and collect our own data. So I thought that there was no better way since there was no data on this out there, there was no better way than to • • • interview other patients to see if • • • they had similar experiences with prednisone or vitamin D. And, um, so when I talked to quite, um, a few, they had told me that they never developed hemorrhage, uh, that large bruise on their abdomen. However, they told me that they also were over prescribed vitamin • • • D because again, the doctors and researchers didn't do that second scan for the inactive form of vitamin D. And they said that when they were taking vitamin D and prednisone, there were a lot of detrimental, • • • • um, effects on their bodies that they experienced. And one man actually told me that he did start to • • • • • ease very easily when they upped his Joseph prednisone while he was on vitamin • • • • D, which didn't happen when he was off of vitamin • • • D.
Interesting.
So he was continuing to take the • • pretinosome, which, most of us do. I think that's for ninety 90% of patients, that's the first line of defense is prednisone. So almost everybody listening to this, if they have had • sarcodosis, has, taken prednisone. But the vitamin, uh, D is the wildcard here. And so you found at least one other person. How many patients have you • • • • • interviewed?
So, um, through FSR, I interviewed • four. And, um, then outside of FSR, on my own findings, I interviewed about ten to fourteen.
Okay, all right, got it. And these patients were • • • all were they taking vitamin D because they were in the supermarket and they said, oh, I'm going to take vitamins. Vitamin D is good for you. Or were they prescribed vitamin • • D?
No. Every single one of them was prescribed a vitamin D supplements, except for the very few of them, • um, whose doctors actually thought to do the scan for inactive vitamin D and saw the circuit patients overproduce it naturally. So, aside from the two that were taken off the supplements because of that second scan, everybody was prescribed vitamin D • • supplements.
Got it. So are you still actively looking for people to • • interview?
I am, yes. So, • • um, while my project itself is due in the next month for the class, I will definitely be continuing to research myself. So, yeah, I'm definitely looking, um, for more interviewees.
Yeah. Okay. So what kind of person was your • • • • grandmother?
My grandmother was amazing. She was just the best person. She was my best friend, really, • truly. She, uh, was the one who kind of. My parents were both at, um, work • • very most of the day. So she was the one who I kind of spent most of my time with when I was, um, • • little. And, um, when I grew • • • • • • up, • • um, she was honestly an incredible woman. She taught me to Cook, she taught me manners. She taught me everything honestly. And, um, while the disease definitely slowed her down, she had oxygen tanks that she was trapped to and she couldn't really • • travel. Even though, um, she loved to travel, she, um, still somehow • • always helped me with whatever I needed. She always was there for me. Whenever I had an event at school, she would always help me with those. • • • • So she • • was so absolutely selfless. It was honestly inspiring to me.
That's an amazing story. And then, when did she first start noticing that there was something • • • • • • wrong?
When I was about • five. I, um, don't even remember what she noticed. If I'm being honest, I think I was too young to notice. And when she passed, I was only thirteen.
Well, um, it's been a long time, so I don't really know what caught how she noticed it, but I just • • remember, I, um, was sitting on the couch when I was five and there was a man that came with oxygen tanks into our house at about seven or eight. 08:00 p.m. It was late for me back • • then, and, um, he strapped her to the oxygen tanks or strapped them onto her, I guess so. That's just what I • • • remember. I remember she had a lot of trouble breathing.
That's what I remember it to • • • • • be, ultimately, because it's very hard in many, um, cases for doctors to even diagnose • • sarcoidosis. So I was just wondering if you, um, knew anything about • • how that all came.
So, um, they didn't really know what it was back then as well, as much. It was even less research than it is now. And at that time, she was in her late fifty 50s and told her that she was one of the really rare people and that, um, this illness only traveled • • within very young women, which now we see is not true at all. But so, um, yeah, at the • • time, they didn't expect • • it. They, um, thought it was actually literally anything • • • else, but, um. Yeah, so that's what they kind of told her. They said that you're one of the rare women that isn't in her twenty 20s or 30s that got • • • • this interesting.
Wow. So she lived with you're, spending most of your time with her, your parents are at work and she's got these oxygen tanks. What was her daily life.
Like?
It was very selfless. Again, I don't know how to describe • • • it. She was on bedrest, sadly, for most of the last few • • • years. • • Um, it was very hard for her. The oxygen tanks and the absolute lack of energy that she had and the lack of mobility that she • • had. So, um, her life was mostly just taking care of me and my little cousins. I have three little cousins who are all boys, who at the time lived with her as • • well. And, um, so she would take care of us all the time. She would Cook for the whole • family. So her daily life was just taking care of others. Always. It was always helping my little cousins with their homework, helping me with my homework, cooking for us, cleaning the • • house. So, um, it was selfless, very selfless.
But she was able to do that even with the sarcoidosis. Uh, did she have the oxygen tanks that you pulled on a little cart or how did she get Around?
Um, well, the oxygen tanks were on wheels, so she could walk and kind of stroll them. But cooking wise, uh, she kind of just stood and seared it on the pan and put it in the oven. And then for all of our homework, we would be usually sitting for that and then cleaning wise. I mean, she didn't mop the floors or anything like that, but she'd, like, clean up the dishes or something that required standing and moving her arms instead of running around the house.
And she just continued to do that right on through Sarcaidosis.
Oh, • • • • yes.
Wow. What was your grandmother's name?
Lydia Glaser.
It must have been very sad for you and your family when you took her to the hospital because of what looked like a bruise. And then she didn't come home.
Yeah, it was shocking. And, um, there were definitely aspects of, • • um. Um, I guess layers of shock that came in as well, because it was really interesting. She had • • actually been doing, um, a lot better on the last two days before her passing, then her entire week • that she spent there, and they had actually signed her out of the ICU and put • • • her into, um, normal hospital room. And she would be fine to go over the night. So, um, in the morning, they said that she would be free to go. And then that morning, her kidneys started shutting down. And so, • • • um, that was the shocking, um, part, I think it was. Two days later, she passed away. Um, and again, the kidneys were also another kind of thing in my research that I looked at as well, because, um, of kind of the connection of vitamin D and prednisone and all that. So all of it, her whole case, honestly, is just such a • mystery. And I'm trying, um, so hard to kind of connect the dots, but it's very hard, as you can • • • imagine. • • •
Wow. So you reached out to the foundation for sarcoidosis research. Did you just find them with a Google search or how did that come to be?
Yes. So I believe, um, it was my sophomore year of high school. I'm a senior now, so two years • • • ago, • •um, I don't know. I felt like I was old enough to kind of • • • start researching and looking into her case file and all that • • stuff. But, • • • um, before I even began or thought of my • research, I just wanted, um, to do something that would contribute to the community that my grandmother was in, and that would kind of, I don't know, not honor her, • • but, yeah, I guess it is honor her in a way, because I just saw how she was such an active person. She loved to travel before Circuit Oasis, and now she couldn't. And I couldn't imagine a whole community, um, of people going through that. • So not only in, um, her name, but also for the community. I just kind • • of reached, um, out. I asked for an internship, but I was sixteen 16 and would, uh, only give out internships to eighteen 18 • • or. And so they, um, actually had to redo. I feel terrible for Mindy. They had to redo their entire paperwork to allow me to intern and volunteer at the age of • • • sixteen 16. And I got put with Jim and his peer mentor team • • and. Yeah, it just kind of took off from • • there.
Wow. How old are you now? Are you eighteen?
I'm eighteen 18.
Yeah. Eighteen 18 now. Okay, so you've been doing this for two years? Yes. And will you continue, uh, to work with FSR?
Definitely. I'm trying to start a youth advocacy program at my high school where I've been trying, um. It's getting very close. • • • • Um, I have a lot of ideas for FSR, and, uh, I also just love working with everybody in the gym. It's a great community that I love being a part • • • • of. • • • • •
Wow. • Um, and so when will you feel like you have a sample size • • • or enough, uh, data to move, uh, • • forward with • • your project or feel like it's Done?
I don't think I'll ever feel like it's done if I'm being honest. I think I want to keep pursuing this until I get a solid answer or until I start testing it in the lab or something like that. So I don't think my hypothesis is enough for me. And I don't think gathering enough evidence to support it is enough for me. I think I want to actually see the evidence to have, um, it kind of be enough and then see how we can. I mean, if it's true and if it's plausible to • • see how I can keep, um, helping and seeing if maybe people should start testing for this inactive form of vitamin D and seeing how I can kind of make that happen. So I don't think that it's honestly ever going to be done for me. This project. Um, even with hypothesis, that's definitely not what I'm ending with now.
You will know soon if you've been accepted to Harvard or one of these other places. Are you going to be a medical student? Because you told me that you also might look at being a lawyer. I can't imagine you having the time to study for the bar exam and doing this.
Yeah. So it really depends. I'm just so unsure of my major right now. I have two very different kind of spheres and majors that I could go into right now. I've been working at a law firm for the past couple of years. I really like that sphere, um, of work as well. But even if I were to go into law, I think that I would still continue this with what time I had and maybe pass it on to somebody else and just kind of help out as much as I could. But I definitely don't want this project and this hypothesis to kind of • • • end because I think it is, um, so important. So if I do study, end up researching medicine in College, um, and have that be my major truth, this is definitely going to be my preferred project. But if it's lost, then either I'll pass it onto someone or just continue it on my downtime.
Yeah. So have you gotten any sort of interest, uh, from researchers that are already out there in the field, that have been through all of this and are looking for • • something to dive more deeply • • • into?
So I've run this by, um, the two researchers that I think would be most interested in right now or have given me the most interest. • • Um, one young man, uh, at Stanford, Dr. Matthew Baker, he showed a lot of interest in this. He's helped me with, the abstract of my paper and my hypothesis. And then Dr. Laura Copp at UCSF, uh, has also kind of responded and given me • • some feedback. So, I think it's kind of • • also, I can't imagine being a researcher and • • having all of these medical students with me and then • • having a high school student trying to call me and say, • • hey, here's what I've been • • • doing. Why don't you take me • • on? So I, um, don't know. I can't imagine really that happening for me now, but it's shocking that I've gotten so much feedback from all these researchers. And although these responses from them so far, those two have been the most promising. But I definitely want to start trying to get into labs and things like that, which maybe would be possible with Stanford, um, sooner or later.
So you do realize how otherworldly this sounds - high school student calls and says, I need you to look into this. And here's what I think. And I've already interviewed people, and that just doesn't happen every day.
Yeah, I know. It's silly. I feel silly talking about it if I'm being honest, because I don't know, I can't really take myself seriously. So I can't imagine all of these people with MDS and PhDs and who've been working and researching for so long looked like taking me seriously, which is completely fair. But somehow I've been getting all these responses. So I guess something must be working or they just find me to be funny.
I don't know. But you have a real story with your grandmother, and you obviously have, uh, a drive and a passion, and you've gone about it the right way by going through the foundation, for sure. And if you've got Mindy and Jim Kuhn on your side, um, those people, uh, when they speak, people listen.
You're doing it the right • • way.
Hopefully. Yeah, hopefully. We'll see. Hopefully this takes off somehow.
All right, so you and I are speaking right now. On the ten 10 March in 2022 and very comfortably, um, ten, 1030 in the, uh, my time. And you are up at what, seven, 730? Yes, 730. And about to go to • • • school?
Sadly, • • yes.
So where do you go to school?
Redwood High School in Larksburg, California.
Um, Redwood high School. And you're taking AP • • • • classes?
Well, not a lot. Three.
So when you get to College, how many College credits will you already • • have?
More than I need. So I think I would have a semester, uh, done already.
It depends how many classes I take there.
Right. And if you get into, say, Harvard, they'll accept all of your AP credits. You • hope.
I hope my AP exams should allow for • • • • • that, um, to be a realistic thing, but I'm not sure because some of the classes AP research. I don't think there is a College credit for • • it. But we'll see. I don't know. It depends on every school takes different credits, but hopefully they'll take all of my credits.
Yeah, • • well, and are you taking a lot of chemistry? Uh, and so forth and so • on?
Biology. I love biology. Biology. Physiology. Tech. Chemistry. I took last year. It's very interesting, but for some reason, physiology and biology is really my thing. I really love that.
Okay. But you said, sadly, you're going to school today or are you just over it?
Yes. Senioritis is kicking in. I'm not sure if you're familiar with the term, but it's really big over here. I'm, um, done. I'm ready. I'm ready for the • summer.
Yeah, we had that term even back when I was in high school. In the dark ages.
Yeah.
All right. So if somebody wants to reach out to you, if they listen to this and they want to be interviewed or they want to share a story.
How do they do • • • • it? Well, they can email, um, me or they can. I mean, I have social media. Um, that's also a thing, but, um, they could also reach me through Mindy or, uh, Jim as well. They all have my, um, contact information. But John, I can leave, um, my email with you as well.
Okay, let's do that. And I'll just put it in the show notes and then people can just click on that and send you an email. And I don't think you'll, um, be covered up with people, but hopefully somebody listening to this will say, wow, this young lady is on to something. And let's give her the opportunity, uh, to succeed.
Hopefully. Okay. Angelica, thank you so much for your time this morning.
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