Girl Power: Use Your Voice in Medical Misdiagnosis
about the episode
In this powerful and heartfelt episode of Innovate & Elevate, Sharon Kedar is joined by two remarkable young women, Alice Paul Tapper and Audrey Maged, for an inspiring discussion on the importance of self-advocacy and resilience, particularly in the face of medical misdiagnosis.
Alice, a high school senior and author of two picture books, shares her harrowing experience of surviving untreated appendicitis that led to a life-threatening sepsis diagnosis. She details her journey from feeling dismissed by healthcare professionals to becoming a fierce advocate for herself and others. Her story is a testament to the critical need for patients, especially young girls, to speak up and advocate for their own health, even when it means challenging authority.
Audrey Maged, Sharon’s daughter and a fourth grade student, was diagnosed with pseudotumor cerebri, more commonly known as idiopathic intracranial hypertension (IIH), a condition that involves increased pressure around the brain, leading to symptoms like severe headaches. Audrey joins the conversation to reflect on the common barriers children face when trying to express their needs in a healthcare setting. Both Alice and Audrey emphasize the importance of teaching young people to use their voices, not just in healthcare but in all areas of life.
Sharon, Alice, and Audrey unpack the societal norms that often discourage girls from being assertive and how these norms can have serious consequences when it comes to healthcare. They also discuss the emotional and psychological impacts of feeling unheard and the role parents and communities play in empowering children to advocate for themselves.
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“It is crucial to teach girls and boys from a young age that they have to share what they are feeling. Speaking your mind can make all the difference—especially in a medical situation.”
About Alice Paul Tapper
Alice Paul Tapper is an author, Girl Scout, Misdiagnosis Activist, Sepsis Advocate and high school senior living in Washington, D.C.
Alice has authored two books, the first, titled "Raise Your Hand," was released when Alice was eleven-years-old. In school, Alice noticed the girls in her class were not participating as much as the boys, and with the help from her Girl Scout troop and parents, she came up with a patch that girls could earn if they took a pledge to be more confident in school. Her picture book illustrates her determination, bravery, and unwillingness to accept the status quo. Alice's second book, "Use Your Voice," chronicles Alice's real experience of advocating for herself during a medical emergency. Alice is the daughter of CNN Anchor, Jake Tapper.
About Aubrey Maged
Aubrey Maged is Sharon’s daughter, a fourth grade student, and Junior Misdiagnosis Advocate. In early 2024, Aubrey was diagnosed with pseudotumor cerebri, more commonly known as idiopathic intracranial hypertension (IIH), a condition that involves increased pressure around the brain, leading to symptoms like severe headaches.
Episode Outline
(01:47) Raise Your Hand: Be Bold, Be Brave
(09:42) Alice’s Misdiagnosis Journey
(18:45) Use Your Voice: You Are Your Best Advocate
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Sharon Kedar 00:00
Behind every pioneering idea, method and device is a fellow human or humans, a trailblazer who is daring enough to ask the questions that push the boundaries and make the impossible possible. I'm Sharon Kedar, co-founder of Northpond Ventures, a multi-billion dollar science-driven venture capital firm, and the host of "Innovate and Elevate." In each episode, we'll have candid, in-depth conversations with top doctors, scientists, and innovators about leading edge discoveries and how they impact our lives. It's time for all of us to "Innovate and Elevate."
Sharon Kedar 00:38
Please welcome my special guests today, Alice Paul Tapper and Audrey Maged. Alice Paul Tapper is an author, Girl Scout, Misdiagnosis Activist, Sepsis Advocate and high school senior living in Washington D.C. Alice has authored two books, the first, titled "Raise Your Hand," was released when Alice was 11. In school, Alice noticed the girls in her class were not participating as much as the boys, and with the help from her Girl Scout troop and parents, she came up with a patch that girls could earn if they took a pledge to be more confident in school. Her picture book illustrates her determination, bravery, and unwillingness to accept the status quo. Audrey, could you hold up the book before we get to the second book? Alice's second book, due to be released August 27th on her birthday, and my birthday, "Use Your Voice," chronicles Alice's real experience of advocating for herself during a medical emergency. Alice is the daughter of CNN Anchor, Jake Tapper. Alice, welcome to the podcast.
Alice Paul Tapper 01:44
Thank you so much for having me.
Sharon Kedar 01:52
Okay, so Alice, you know I just love you in general. Your story is amazing. You're 16 years old, You have a bestselling book and another book coming out on your birthday. Can you tell us a little bit about yourself and your journey to authoring two books, all before you're 18?
Alice Paul Tapper 02:11
Well, I've always loved to write. It's just been like my favorite subject in school, and when I was little, I used to write little blurbs about extinct sharks and I knew that writing was just one of my really big passions and when I got the opportunity to write, "Raise Your Hand," I was ecstatic and I would sit on my computer and daydream about the book and write about it, and I knew that I wanted to keep writing.
Sharon Kedar 02:37
Audrey, have you read the book? What did you think of it?
Audrey Maged 02:40
I thought that I liked that she said for the girls to raise their like hand more and for because the boys raise their hand more than the girls.
Sharon Kedar 02:51
Do you experience that at, because you're about the same age that Alice was when she wrote the book.
Audrey Maged 02:53
Yeah,
Sharon Kedar 02:54
And the book became a bestseller. So did you do a bunch of press for it?
Alice Paul Tapper 03:00
I did. I was on the Ellen Show. That was really fun. And I tried to raise as much money as I could for the Girl Scouts Nation's Capital because I'm not a Girl Scout anymore, but I've been a Girl Scout for a really long time and I got my Silver Award and my Bronze Award, and it's always been a really big part of my life and my mom was the troop leader, so it was really fun to create the patch, which is what I did first. When I noticed boys were raising their hands more than girls in class, I brought it up to my Girl Scout troop and I went to the Girl Scouts Nation's capital in D.C., and I told them about my idea about a patch and a pledge, and you pledge three girls to raise their hands in class and it was really engaging, because girls in my grade would recruit girls who weren't Girl Scouts, and I just felt like I was making a change and I felt myself being more confident in class after that, because it was more of a leadership position that I'd been in, and when you're 11, you don't really have any leadership. So it was definitely a really pivotal moment in my life.
Sharon Kedar 04:07
That is brilliant, that is amazing. Where did that come from? We obviously have a lot to unpack today, but where did that come from, sort of when did you get the memo? Is it as early as you can remember? This whole idea of speaking up? Or was it something that happened you know, in your life like? Just to write a book about it, to have a patch called Raise Your Hand, that's a really big deal, so, did it come to you one day? Or how did it really come to you?
Alice Paul Tapper 04:36
Well, all my life, I've kind of noticed that like when girls are really young, like boys and girls in kindergarten, pre-K, there's not really like a lot of gender role stuff as much. Everyone kind of like hangs out with their friends and stuff, but then once girls start getting 9, 10, 11, I just feel like I saw a lot of my friends shut down, and it really like impacted me a lot, because I was so confused why everything was changing, kind of when I got to fifth grade I noticed this, and then I just kind of felt myself to go more and more into myself and shy. And I was never a shy girl, I'm not a shy girl now, but I was wondering like why is this? Like what's the matter with this? And I've been raised by a goddess of a mother and she has just always taught me to be a feminist and to speak up for herself, and I went to the Women's Marches and stuff, and she has been a really, really powerful role model for me because she always spoke her mind, and I never felt like, shy when I was with my mom. And she would make me order my own drinks at Starbucks and restaurants, and it would make me so nervous sometimes when I was like 11 years old. But then I finally came out of my shell again, once I started noticing that it's just what girls are taught to act like. Girls are taught to be kind of meek, and it's just a patriarchal thing, I think, that girls have to be submissive to boys in their class and just to let men be right, and it's not something that's conscious, I think. I think it's just very like societal, the norms. I don't know.
Sharon Kedar 06:17
Yeah, it's so interesting to hear you talk about that. I turn 50 on our birthday, and I felt exactly what you're talking about growing up. I remember being five years old and just deciding that I didn't agree with that sort of system that you're talking about, but I didn't have the amazing ability to create a book. It is so fascinating, you know, what you're talking about permeates like, even when I was in business school, half your grade is speaking up, and I graduated many, many years ago from business school, from Harvard, but there was a lot of bias. Like if a woman spoke up at the time, she was considered sort of negative words, and when a guy did, he was considered like authoritarian, and I've never myself like talked publicly about it, unpacked it, so it gives me sort of hope to hear you talk about it, and really, it sounds like you're just not afraid to go there. You're basically saying, "Raise your hand," and what I hear you saying is like, "Look within yourself," not to sort of, what others are expecting of you. Is that right?
Alice Paul Tapper 07:28
Yes, and I just think that like you have to shine. And I love like babysitting and like spending time with like younger girls because I want to help them find their shine and just to speak out, because I know like for me, especially, I felt myself close off so much once I got to fifth grade, middle school, when you start kind of growing up, but you don't really know what's going on. And I think it's so important for girls to sometimes, you know, act rowdy and silly, because girls can't really be silly in a classroom, and I don't know, I just think it's a positive thing to have fun, and I just remember, all the girls were so quiet in class and you just let the boys be rowdy.
Sharon Kedar 08:16
How can that still be? Audrey, what do you think? I mean, you're going into fourth grade, like how can that still be the case today?
Audrey Maged 08:23
Well a lot of the boys in my class are more like energetic and get in trouble more than the girls, because the girls don't really like yell and stuff and like be like so energetic like the boys. So the boys are like more like energetic and get in trouble more.
Sharon Kedar 08:45
Do you feel like you can raise your hand?
Audrey Maged 08:46
Sometimes.
Sharon Kedar 08:47
Not always?
Audrey Maged 08:48
No.
Sharon Kedar 08:49
Why?
Audrey Maged 08:51
Because sometimes I just feel like shy about it.
Sharon Kedar 08:55
Like just that you're going to get judged, kind of like for the reasons Alice said? Well you know what I love about, Alice, what you're saying and what you're saying, Audrey, is you are having the audacity to talk about it. So when I grew up, I really didn't fit in, because I've always subscribed to "Raise Your Hand." I wish I had the badge that you're talking about. I wasn't a Girl Scout, but I would've gotten ten of them. If you're raising your hand and you don't have that community, it can be really isolating. And I've actually seen a lot of successful women who have gotten to where they have, and it's been sort of an isolating journey, and this really is sort of an invitation to be like, it's okay to do it and let's bring others.
Sharon Kedar 09:45
Switching gears, so Alice, recently you had a medical emergency that is the inspiration behind your new book, "Use Your Voice." If you are comfortable, can you please tell the viewers and listeners about your experience and what you went through?
Alice Paul Tapper 10:02
My story is more of a darker one. I, one night was just throwing up and I thought not that much of it. I was like, "Wow, my stomach really, really hurts." But being a survivor of a misdiagnosis in the hospital is probably one of the things that's a defining thing for who I am as a person and how I've just grown from that experience. So in November 2021, I was vomiting one night and my pediatrician said, "Drink fluids," like normal stomach flu things, but I was not getting better. So one day my mom took me to the hospital to get a fluid IV because she thought that I was so out of it from the fluids. They weren't really taking my care seriously, the hospital, they were like dismissing me and saying it's probably just a stomach bug, and I was being dramatic in my pain. Sunday, that was a Saturday. On the next Sunday, I had a fever of 102 degrees and a lot of sharp pains, and when I was driving to and from the hospital, I remember screaming and flinching at the pain of driving over speed bumps in the car, which is a very red flag, especially since recoil pain is like the number one thing for appendicitis. And there's a score that I was studying, called the pARC score, which is the pediatric appendicitis test, which I did not receive at the hospital. I hadn't eaten, but then I ate a bagel and my doctor was... My pediatrician was saying that I was fine, I was just tired and I was going to get over my stomach flu.
Alice Paul Tapper 11:40
Then I was transferred from my first hospital to the second one, and the doctors were always very calm around me. They were really late always coming to my room, very calm, so, so was I, even though I was so out of it and tired. The doctors claimed that imaging was very unnecessary, and when you're a family going into the hospital, you trust everything the doctors say, because that's their job, they know what they're doing. I was given a jump test for my stomach pain, which is the appendicitis test, and I was barely able to walk and I got maybe half an inch off the ground during the jump test, and that ruled out appendicitis for them. I was in excruciating pain and they put it down on their chart as mild tenderness. I couldn't straighten my legs when I was sitting in the hospital bed, because my stomach was so tight and it just kept getting worse and worse, that my legs were always hunched over and bent on the bed. And I was at the second hospital for 32 hours before I got an X-ray, which is what I needed. And to get an X-ray, my dad, who I'm so grateful that he has the agency and resources to contact someone in the government, who can contact the head of the hospital, to beg and demand for an X-ray for me, that they were saying was so unnecessary.
Alice Paul Tapper 13:02
I was given an X-ray after 32 hours and doctors were rushing into my room, saying, "There's something very, very wrong with her appendix," and I needed to go into surgery immediately. I was in septic shock and I had poisonous fluid all over my abdomen. I was given a sonogram after the X-ray, a CT scan, and my body was just slowly destroying itself. So I was transferred to the ICU, and from there I was given laparoscopic drains, inserted, to drain out the fluid, and I couldn't get my appendix removed because of how damaged my body already was. So I was in the hospital for around two weeks with two laparoscopic drains, and then I was discharged after those two weeks, and they were saying, "This is going to heal with time, you'll feel better with time." This was during Thanksgiving, so that was at the beginning of November, when it all started. And during Thanksgiving, we weren't thankful for anything that year, because I was still so sick, couldn't stand, couldn't walk, I was... My weight had dropped to... I was in the 90 pounds, and I'm a tall girl, 5'10", so that was really dangerous for me. And I just kept getting weaker and weaker. So my parents took me back to the hospital and they gave me another scan, another CT scan, sonogram, X-ray, and they noticed that I still had all the toxic fluid in me, not all of it, but I still had pockets of it, and that was still making me really sick.
Alice Paul Tapper 14:37
So I had to get another laparoscopic drain inserted and I was in the hospital for another week and a half or two weeks. And until maybe the end of March, when I got my last surgery, I was basically bedridden. And even when I was discharged and I could go home, I couldn't go to school because I would be so tired. I'd go to school for maybe half the day and then I'd be like, "Mom, you need to come get me." But my life from the beginning of November to March, it was not living, I was just existing. And my final surgery was at CHOP, my favorite hospital in the world. And they realized when I was getting my appendix out, finally, that was my final surgery in March, that my organs were twisted, my colon was twisted, and there was a lot of issues with that before, and they fixed everything for me, and then I started my healing process. But mentally, it is so exhausting for a family and for a kid to go through something like that, and to think that it was all just appendicitis and it was so preventable, is diabolical to me. And it's almost medieval the way they treated me, saying I didn't need scans. They were saying it's so bad for a uterus to get X-rays and stuff, but why worry about that now when I was in septic shock and I was going to die, probably. If I had waited any longer, it would've been so hard for me to recover from that, and that's my story.
Sharon Kedar 16:16
Alice, you are beyond amazing. It is so unacceptable, the failures in the medical system that happened to you. What's crazy about your story is that there's just layers and layers of misdiagnosis. It sounds like literally from November to March, and you were a kid, you are a kid, for four months like, that you just spent weeks at the hospital without the basic care that you needed.
Alice Paul Tapper 16:50
Yeah, it was a very... It was a struggle for my parents. I had to watch them be so upset all the time. I would try to have some friends visit me in the hospital, because I missed my life, I missed my friends, I missed school. I never thought I'd miss school that much. But when they came, they were scared because I was hooked up to machines, I was getting my vitals taken all the time, my arms were stick skinny, I couldn't walk, I had to use a walker. And the doctors, when I was sick, they were saying I would, and I still had all the fluid in me, they were like, "Oh, she needs to walk. She's not doing as much as she should for her care." They were blaming me that I wasn't doing enough when I couldn't physically walk. They were saying, "She has gas pain, that's just from the laparoscopic surgery," because it fills you up with gas when you get them. But they're saying that was the pain that I was feeling, which was not the case at all.
Alice Paul Tapper 17:48
And they were so dismissive of me. It was like an alarm in my mind was going off all the time that I needed help and I was in the hospital and not receiving the help that I needed. And it was, and I know that Audrey experienced something similar, where she, right? You had headaches and they were not listening to you. And I think a lot of it had to do with the fact that I'm a girl. Because I was trying so hard to share and express my feelings, but they were not taking what I was saying seriously. And they were just like, "You'll get better with time, better with time." And I know that wasn't true, because after my last surgery, I immediately felt better, and I immediately knew that everything was going to be okay. But from November to March, I did not think that, and I thought that I was going to be hooked up to machines for my whole life or I wasn't going to make it.
Sharon Kedar 18:49
My gosh, I've had Alice when you've talked so many chills just hearing your story. Because the crazy thing about it is it started with you being called dramatic. So I think it's one thing to be a kid in the hospital to be called dramatic. I really think that it's like, how is that helpful? And dramatic does to me have an undertone of gender bias for you to have been called dramatic. I do think that that's not something they probably would say to a boy. And
Alice Paul Tapper 19:26
And also, when I was in the hospital, I felt like I was disrupting every doctor. I felt like I was bothering them, when I needed help and I needed care. And I don't understand what system taught me in my head to subconsciously think, "I'm bothering these people, like I'm asking too much of them." When they would come in and every hour they'd come in and show me a pain scale one to ten, which, by the way, the faces on the pain scale freaked me out, and I was fourteen.
Sharon Kedar 19:54
She knows the pain scale way too well. All too well, the pain scale. She's gotten asked the pain scale so many times. What are you showing, Audrey?
Audrey Maged 19:59
She made a prettier one.
Alice Paul Tapper 20:02
I did. I tried to, on my new book, make, I have little characters in the book that are my imaginary friends that helped me share what I needed to share to the doctors that I needed help. And unfortunately, I couldn't get every gruesome detail in my book for kids. You'd scare them off. I'd scare them off, but I really do love the little guys they drew for me, because I wanted to make printables of the little characters, because I think the mad and sad faces on the pain scale really freaked me out. And I'd always be like, "This is the worst pain I've been in, so I guess I'm a ten, I'm a seven." But I remember just thinking in my head like, "I need to say I'm in so much pain," but I never wanted to disrupt and bother the doctors. Wow. That is just something that I was taught.
Sharon Kedar 20:52
There's the, you know, life irony that you had written, "Raise Your Hand," and here you were in a situation where you needed to raise your hand but basically, you were effectively trapped. And I am, you know, pro the medical system, both my siblings are physicians, but the reality is, you have to self-advocate, and what happened here was just a series of unacceptable failures. When you talk about the pain scale, it really, as a mother, hits me hard, because I remember, Audrey, do you remember? When Audrey was, her diagnosis of pseudotumor cerebri in March, or now it's known as IIH, where she needed some spinal fluid removed for this headache that was a nine out of ten. She went three times to the hospital and they gave her migraine cocktails three separate times. And then the third time, since it didn't work, they injected her head with what's called a nerve block, in eight different spots with lidocaine. But do you remember, Audrey, the pain scale? And how they kept asking you what your pain was? Can you tell us a little bit about your opinion of that?
Audrey Maged 21:58
Everyone kept asking me what like my pain was at a scale? And I didn't want to say ten because I didn't want it to freak people out, but I felt like it was a ten and I had to say nine, but I felt like it was a ten, but I did not want to freak people out.
I remember as a mom, Audrey saying nine out of ten, before and after the migraine cocktails, and it just sort of... Her being looked at, so curious what you thought like, "How could it be a nine? Are you making this up? Are you sure it's not lower?" One doctor basically said, and she heard, you know, "Maybe she just needs to go..." And, pro therapy, but that wasn't the issue. You know, talk to a therapist. What did you think, you know, when they kept asking you about that pain scale and you were always in a nine for like two and a half months?
Audrey Maged 22:48
I thought, I know that it's not something that a therapist could fix, but I didn't want to tell them because I was scared to use my voice.
Sharon Kedar 22:55
But why were you scared to use your voice?
Audrey Maged 23:00
Because I don't know them.
Sharon Kedar 23:02
Yeah, you know, I mean, so what really hits me here is the agency. Why do you think that the basics were missed? Like as you step back, and how crazy and unacceptable story that you went through. I mean it just should never have happened.
Alice Paul Tapper 23:20
First, Audrey, what you were saying really hit me, because I totally understand what you're feeling. And I've talked with, there's some doctors at the University of Michigan, which is my favorite place.
Sharon Kedar 23:33
And where you're going to school.
Alice Paul Tapper 23:33
And where I'm going to school.
Sharon Kedar 23:35
Go Blue!
Alice Paul Tapper 23:37
Dr. Prashant Mahajan, he is the Head of Medicine at the University of Michigan, and he and I were talking about the pain scale, and how sometimes it's incredibly unnecessary because people say what they think other people want to hear. And a lot of people, a lot of the times, especially girls, are not thinking about what they need. And really, in the end, you are your best advocate and you need to speak out, and confidence is really the message of my two books, because it is so important to let people know what you're thinking and to speak your mind, and it becomes really, really dangerous if you don't. Because if you don't say anything, something like a misdiagnosis can happen and sometimes you don't want to bother the doctors and that's when it becomes very dangerous, and that's when you really, really need to use your voice.
Sharon Kedar 24:31
Well you know what's amazing about that, and again, both my siblings are physicians, but what is this about feeling like you're bothering the doctors? Because we had that, you articulated it so well, but didn't you feel like that too? Like it just felt like we were like bothering the doctors but they kept saying to, I know it's different for you, but for Audrey it's like, "She looks fine," you know?
Alice Paul Tapper 24:50
That's what they were saying to me. They were like, they said to my mom, "Oh, if she had appendicitis, she wouldn't be on her phone like that, she wouldn't be scrolling on her phone." I was just trying to escape what was going on everywhere around me. And I don't think that scrolling on my phone was a defining factor. And also, sometimes I felt like the doctors were acting like I was being rude to them, and they were giving me like a standoffish presence, when really, I was just in so much pain that I couldn't comprehend anything that was going on.
Sharon Kedar 25:21
I think there is sort of a power over situation that can happen where you can't raise your hand. Because the medical system, it's like if you're not a medical doctor, you just have to sort of receive and your message is, "Uh-uh, use your voice, you take it and you advocate." But what were you going to say, Audrey?
Audrey Maged 25:39
Well, when I was in the hospital, I wanted to go on my iPad and I was going on my iPad and the doctor said, "Well, she's fine because if she's going on her iPad, she wouldn't have a like... She like wouldn't have a migraine and a therapist could fix this."
Sharon Kedar 25:56
But why were you on your iPad?
Audrey Maged 25:59
Because I didn't want to listen to them and I just wanted to like... I was bored, I couldn't do anything.
Alice Paul Tapper 26:05
That's exactly how I felt. It's really scary when you're a kid and you're put in a real world situation for the first time ever, and you grow up and you don't realize that you're in charge of your own life, and that's something I realized, I don't know if you can relate to that, but when I was fourteen and this happened to me, I was like, "Wow, I'm in charge of my own life right now. I'm in charge of telling my parents what I need, telling my parents I'm in so much pain." Because you are your best advocate and no one can tell you how you feel. And it's so scary, and realizing that for the first time really, really does mature you.
Sharon Kedar 26:44
Yeah, I mean I think, Alice, in your case you had the most amazing parents who basically were like, what I hear is, "This is unacceptable. We're just going to keep, you know, figuring this out till we get to acceptable." Which ended up being lifesaving for you.
Alice Paul Tapper 26:58
I think that in you and Audrey's case, it's very similar to me and my mom, because my mom had to be my superhero, and she was, and she took control of all the doctors. I remember seeing her yelling at them and making sure I was getting everything I needed, and I trusted her. But also, going through that experience, I lost so much faith in adults. I lost my innocent trust and like to believe in everything doctors and adults tell me, which was very... It really shifted the way that I think about the world.
Sharon Kedar 27:36
I always talk about quality of care and you know, you have no agency going into an emergency situation, which is why I think that, you know, August 27th, "Use Your Voice." It's so important, because nobody is going to advocate for you other than you.
Alice Paul Tapper 27:57
And no one's going to look out for you more than you, and that's why this is so important to me, because I need to share my story for kids who don't have a dad that can call the head of the hospital, that can beg for that connection to get an X-ray. Because if it wasn't for him, I would've died in that room.
Sharon Kedar 28:14
Oh my gosh, I have chills again. Your dad shouldn't have had to call, and it was an X-ray. It's not like we're talking about some, you know, rare gene therapy or cell therapy. We're literally talking about an X-ray that you didn't get. A simple X-ray.
Alice Paul Tapper 28:30
And appendicitis, which is something so simple that everyone knows about. But you know what people don't know about as much? Sepsis. I knew nothing about sepsis. I didn't know what it was when I heard it for the first time, and you can get sepsis from literally anything. You can get it from an infected ear piercing to appendicitis, which is why it's so dangerous. And it really is what you said, a race against the clock. And I think that my book sometimes freaks a lot of parents out, because it is so important to fight and advocate for your kid, in the hospital especially, and it's really, really scary.
Sharon Kedar 29:09
And so you're saying it's like suddenly scary to the parents because it's like you can't just like show up and expect that you're going to get the right care. Exactly. Well, okay, so if we had to say, you know, one, two, three things for kids and parents out there in terms of using your voice, you know, when it comes to sort of medical matters, I'm just curious what each of you would say? Starting with Alice.
Alice Paul Tapper 29:33
Well my takeaway really, for both books even, is just always advocate for what you need and you have to really fight for yourself, and that's when I said it can get really dangerous if you don't, in the medical world. And you're, exactly what we were saying before, that you're your own best advocate, and you have to speak up when adults don't listen. And it's scary, but it's something that people have, like kids have to learn and they're forced to be in it when they get sick, and Audrey knows this firsthand, I know this firsthand and I'm sure every other kid that's had an experience in a hospital knows that they have to speak up. And it's really, really scary, because as a kid you're taught that adults can really handle anything for you, but sometimes it's not that simple.
Sharon Kedar 30:20
Audrey, what do you think?
Audrey Maged 30:21
I think that the only person that can take care of you the most is like you.
Sharon Kedar 30:29
Plus your parents?
Audrey Maged 30:31
Yeah.
Sharon Kedar 30:33
Yeah. I think some of the themes of today, Alice and Audrey are, you know, using your voice. I think that that gets amplified and to be nerdy about it, becomes like multiplicative, when you have people around you who support that. So you know, that can work when there's people around you, it's like your community that is not saying, "You're too much, you're dramatic." Like, you know, like some of those things that were being said, but they're like, "Yes, like we embrace you," or you know, a parent saying to a kid, "Say whatever you want." "Don't feel like you have to apologize." "Our goal is just to get you better." "Say whatever you want." And what's sad about what you all are saying is, basically you're saying that you have to exaggerate the pain to, you know, sort of be heard sometimes. I heard that as well.
Alice Paul Tapper 31:21
Yes, and it's kind of like a warning for parents, is something I want to share because it's so important, especially, to teach girls and boys from a young age that they have to share what they are feeling. And I can't even imagine what it's like for people that don't have like... weren't taught as a kid to speak their voice and yell and tell the doctors what they need, because I know, me and Audrey know, that it's really, really hard to do that, even if you do have a powerful voice.
Sharon Kedar 31:56
Yeah, and so you can get, "Use Your Voice" on August 27th, and share this and learn, and Alice has written an amazing book that will help kids and parents. Where can people pre-order this book?
Alice Paul Tapper 32:12
You can find both books and "Use Your Voice" on Amazon for pre-order. Barnes & Noble, Target, basically the big places. I'd say I'm really excited for my book to come out and to share it with you guys.
Sharon Kedar 32:26
Well thank you for being on the podcast, Alice and Audrey. I think your stories are really inspiring to people, and I think that it should never have gotten to where it did in either of your case. And Alice, I think you are really using your voice in such a beautiful way, and the second book feels like it's just doing exactly what you told other people to do, which is that you are taking your message from your first book to talk about your medical experience and say when you're in that situation, just don't optimize for politeness. Optimize for health, optimize for what's best. And even if you have to ruffle some feathers, ruffle them, because your health is worth it. And I think that's what you're saying. I think it's a beautiful message.
Alice Paul Tapper 33:10
Thank you so much for having me.
Sharon Kedar 33:12
Thank you for being on and for everyone listening and viewing, if you have a health issue, be as vocal as you need to be and ruffle as many feathers and don't settle until you get to the answer. Thank you.
Sharon Kedar 33:20
Thank you for tuning in. Please connect with me, Sharon Kedar on LinkedIn for additional innovative content. If you enjoyed this episode, please take a moment to like it, and don't forget to subscribe to the channel by clicking the button below this video. The views and opinions of the hosts and podcast guests are their own professional opinions, and may not represent the views of Northpond Ventures.
About Your Host
Sharon Kedar, CFA, is Co-Founder of Northpond Ventures. Northpond is a multi-billion-dollar science-driven venture capital firm with a portfolio of 60+ companies, along with key academic partnerships at Harvard’s Wyss Institute, MIT’s School of Engineering, and Stanford School of Medicine. Prior to Northpond, Sharon spent 15 years at Sands Capital, where she became their first Chief Financial Officer. Assets under management grew from $1.5 billion to $50 billion over her tenure, achieving more than 30x growth. Sharon is the co-author of two personal finance books for women. Sharon has an MBA from Harvard Business School, a B.A. in Economics from Rice University, and is a CFA charterholder. She lives in the Washington, DC area with her husband, Greg, and their three kids.
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