- RARE DISEASES AND DISORDERS affect 300 MILLION PEOPLE GLOBALLY. Familial Adenomatous Polyposis (FAP) affects 1 in 8000 people in the US. On Episode 58 of the Shining Brightly Podcast Show (links in the comments) titled “TURNING PAIN INTO PURPOSE” with the incredible childhood patient, survivor and advocate Jenny Jones. At age 9 Jenny was misdiagnosed and mistreated for life threatening illnesses by the healthcare system that led to distrust and depression. Through Life's a Polyp, she focuses on raising awareness and patient empowerment. She started the NORD FAP Research Fund in 2015 (links in the comments) and donates profits from Life's a Polyp Shop and her FAPChildren's Book - Life's a Polyp with Zeke and Katie. Come listen, download, share and review this episode of courage and strength.
Mentioned Resources
All Social Media handles are LifesaPolyp
Website: Life's a Polyp (lifesapolyp.com)
LinkedIn: https://www.linkedin.com/in/lifesapolyp/
Facebook: http://facebook.com/lifesapolyp
TikTok: https://www.tiktok.com/@lifesapolyp/
YouTube: https://youtube.com/lifesapolyp
Book: Life's a Polyp -ImagineWe Publishers
NORD FAP Research Fund: Jenny Jones's fundraising page for National
Organization for Rare Disorders (rarediseases.org)
About the guest - Jenny Jones is a Rare Disease Advocate for Familial Adenomatous Polyposis and Short Bowel Syndrome. Her surgeries related to FAP started at age 9 and after experiencing life threatening complications, she developed medical PTSD, lived with an ileostomy for 6 years before having it reversed and has survived 8 surgeries to date. Through Life's a Polyp, she focuses on raising awareness and patient empowerment. She started the NORD FAP Research Fund in 2015 and donates profits from Life's a Polyp Shop and her FAP Children's Book - Life's a Polyp with Zeke and Katie.
About the Host:
Howard Brown is a best-selling author, award-winning international speaker, Silicon Valley entrepreneur, interfaith peacemaker, and a two-time stage IV cancer survivor. He is also a sought-after speaker and consultant for corporate businesses, nonprofits, congregations, and community groups. Howard has co-founded two social networks that were the first to connect religious communities around the world. He is a nationally known patient advocate and “cancer whisperer” to many families. Howard, his wife Lisa, and daughter Emily currently reside in Michigan, and his happy place is on the basketball court.
Website
Http://www.shiningbrightly.com
Social Media
Facebook - https://www.facebook.com/howard.brown.36
LinkedIn - https://wwwlinkedin.com/in/howardsbrown
Instagram - @howard.brown.36
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#rarediseases #polyps #cancer #cancerresearch #FAP #colorectalcancer #gastrointestinal #shortbowelsyndrome #childrensbook #author #healthcare #advocate #motivation #education #inspiration #podcast #download #listen #share #review #shiningbrightly
It's Howard Brown. It's the Shining Brightly
Howard Brown:Podcast Show. Oh, I have another good show for you. The spotlight
Howard Brown:will be shining on a very special person. I'd like to
Howard Brown:welcome Jenny Jones. How are you, Jenny? Welcome to the show.
Jenny Jones:I'm good. How are you doing? I'm great.
Howard Brown:It's great to see you. Oh, my God, I just we have
Howard Brown:so many good things to talk about. And to do some advocacy
Howard Brown:tonight. And we're going to talk about your your book and all
Howard Brown:that as well. Let me let me read a little bit about you and and
Howard Brown:share with my audience who you are. Jenny is a rare disease
Howard Brown:advocate. Now I'm gonna mess this up. You're gonna help me
Howard Brown:right now. But familial adenomatous poly, poly pop
Howard Brown:cysts. Now you say it the right way.
Howard Brown:Familial Adenomatous Polyposis (FAP)
Howard Brown:Okay, and short bowel syndrome. Thank you for the assist. Okay.
Howard Brown:Her surgeries reported related to FA p. So that's the
Howard Brown:abbreviation started at age nine as just a young, young little
Howard Brown:girl. And after spirits in life threatening complications.
Howard Brown:You've developed medical, PTSD, I have it to its chemo brain or
Howard Brown:brain fog. You've lived with an ileostomy. And for six years and
Howard Brown:you had it reversed, and you survived eight surgeries to
Howard Brown:date. Wow. through life's a polyp, you focus on raising
Howard Brown:awareness and patient empowerment. And you started the
Howard Brown:Nord fat and the Nord is the national organisation for Rare
Howard Brown:Disorders Research Fund in 2015. And you donate profits from your
Howard Brown:book Life Cipolla shop and the children's book. And it's life's
Howard Brown:Apollo with Zeke and Katie. So this is incredible you are
Howard Brown:you've been through a lot, and we're gonna get into that.
Howard Brown:Before we do that, what's something new or different that
Howard Brown:people may not know about? You'd like to share?
Jenny Jones:You know, I, I write a lot for life support.
Jenny Jones:But I also really love writing poetry. And I used to love to go
Jenny Jones:to like the poetry nights, the mic nights. I haven't done that
Jenny Jones:in a while. But I like to do that. So poetry is your happy
Jenny Jones:place. So I tell people mines in basketball court, I tell people
Jenny Jones:find your happy place that stress free zone and go there.
Jenny Jones:It can be cooking, it can be art, it can be yoga, it can be
Jenny Jones:hiking, it can be something athletic, it can be travel,
Jenny Jones:there's lots of things to find, but find your happy place.
Howard Brown:So I'm so glad that yours is poetry. That's
Howard Brown:amazing. All right, let's let's dig in a little bit. And we're
Howard Brown:going to do is, take me through first. Okay, a little bit about
Howard Brown:you know, the Nord fab, you know, the research fund, and why
Howard Brown:you created it.
Jenny Jones:You know, it's kind of funny, I don't even remember
Jenny Jones:exactly what led me specifically, there was a
Jenny Jones:turning point, I remember it was in 2015. That's when I started
Jenny Jones:the SAP research fund with Nord. And I think I just, I had
Jenny Jones:started my my life apolip blog in 2012. And by 2015, I think I
Jenny Jones:was just like, I need to do more, there's something I need
Jenny Jones:to do more. And I started researching where I could do
Jenny Jones:start a research fund with and I chose Nord and I did a big T
Jenny Jones:shirt fundraiser, to start to launch it as a as an exciting
Jenny Jones:thing. And it's become one of my life, passions, my life goals to
Jenny Jones:fully fund this research fund. So it can be used at least one
Jenny Jones:time for a research grant.
Howard Brown:I think it's amazing. And it's really a great
Howard Brown:cause that I was unaware of. And also, in doing some research
Howard Brown:with you a little bit, we discovered that rare gi diseases
Howard Brown:and disorders affects 300 million people globally. That's
Howard Brown:an astonishing number. It's an absolutely astonishing number.
Howard Brown:It is and then FAP in the US is one in eight people. That's
Howard Brown:incredible.
Jenny Jones:Yeah, it's well not when when
Howard Brown:1 in 8000 people that's incredible. It's still a
Howard Brown:very small number, you know, people compared to that can get
Howard Brown:into it one in 8000 can actually get the you know, Polly Pope
Howard Brown:says if I'm pronouncing Are you still gotta help me. All right.
Howard Brown:So But now, the thing is, is that you kind of went
Howard Brown:undiagnosed and it was a real long journey, but But at age
Howard Brown:nine,
Jenny Jones:my first surgery and how old you age nine or
Howard Brown:age nine, are you in like fourth grade?
Jenny Jones:Yeah. Yeah, I think I well, I was going into I think
Jenny Jones:I had my surgery at the end of fourth grade. Yeah.
Howard Brown:So okay, so but but getting diagnosed, going
Howard Brown:through the process of learning what you had, how long The
Howard Brown:period of time was that
Jenny Jones:well, it was longest because I, we were on
Jenny Jones:HMO insurance plan. So we had to have a referral from the primary
Jenny Jones:care doctor and she didn't believe there was anything wrong
Jenny Jones:with me. She just thought I was whiny. So she refused to refer
Jenny Jones:me to a GI specialist for evaluation because I was having
Jenny Jones:chronic abdominal pain. And so my parents had to change
Jenny Jones:insurance plans, and they got me to this paediatric GI doctor who
Jenny Jones:was amazing. When she heard about my symptoms of with pain,
Jenny Jones:and she heard about my family history of FAAP. She immediately
Jenny Jones:was like, oh, no, we have to get you tested. We're doing an EGD.
Jenny Jones:We're doing colonoscopy, we're going to do genetic testing. So
Jenny Jones:if I had been able to get to her earlier, it would have not been
Jenny Jones:a hassle trying to get diagnosed or at least evaluated federal
Jenny Jones:was going on. But yeah, I had roadblocks with that primary
Jenny Jones:care, doctor.
Howard Brown:You did. But all right, so you're a fourth
Howard Brown:grader. You're diagnosed okay. And so what's, what's it like
Howard Brown:being a child and the medical now I was 23 when I got
Howard Brown:diagnosed with cancer, the first time for Stage Four non Hodgkins
Howard Brown:lymphoma, I'm still more of an adult, right? You know, I'm 23.
Howard Brown:Even almost a kid, but you're, you're nine years old. So what
Howard Brown:was it like?
Jenny Jones:It was It was awful. So I had I mean, I had
Jenny Jones:gone to regular doctor's appointments and things. So I
Jenny Jones:wasn't completely new to medical care, but I had complications.
Jenny Jones:So I quickly got traumatised, I don't feel like I got good care
Jenny Jones:at the hospital that I was at. I was dismissed by other doctors
Jenny Jones:like when I was having my intestine had wrapped around
Jenny Jones:itself. And they dismissed me again to me, I was whiny. So I,
Jenny Jones:I was there was a lot that happened during that year. And
Jenny Jones:those those five surgeries that year, that were just extremely
Jenny Jones:traumatic. So I didn't trust providers anymore. And I
Jenny Jones:actually blamed my GI doctor for everything, as well as other
Jenny Jones:people in my life. So I didn't like any anybody I didn't, I
Jenny Jones:didn't like any providers, I didn't I. So I was I was really,
Jenny Jones:you had, they had to restrain me for IVs for my colonoscopies and
Jenny Jones:my ETDs. Afterwards, it was very difficult. I I had a lot of
Jenny Jones:depression, a lot of anger. And
Jenny Jones:I didn't do well with it at all. And even into high school, when
Jenny Jones:I started going to counselling, it got better. But it took years
Jenny Jones:before I could even step foot into the hospital that I go to
Jenny Jones:now, but it started in high school with before I had pain,
Jenny Jones:stop having panic attacks from going inside certain areas of
Jenny Jones:the hospital, I can understand that was your mom, your parents
Jenny Jones:who was your caregiver. And my parents were in actually because
Jenny Jones:my dad worked and my mom has, she has the same very diseases
Jenny Jones:that I have and health issues. So my parents helped, um, they
Jenny Jones:help they raised me, but then they also had help from my
Jenny Jones:grandfather and three of my aunts. And so they basically
Jenny Jones:helped raise me to,
Howard Brown:you did have support, family support, which
Howard Brown:is really important. But still you didn't not knowing and then
Howard Brown:all of a sudden, you know, going through this is it's a lot for a
Howard Brown:little kid, I can tell you that. Now, as you've grown older,
Howard Brown:okay. You told me that high school years were normalised as
Howard Brown:much as possible or not, not exactly.
Jenny Jones:Half and half, about half of them were and then
Jenny Jones:when I had my ileostomy reversed in high school, I had
Jenny Jones:complications. And so the rest of that was when I was 15. And
Jenny Jones:so I had life threatening, life threatening complications.
Jenny Jones:Again, it was very, we kept it as normal as possible, but I was
Jenny Jones:I had to be schooled that home for part of it because I
Jenny Jones:couldn't, I was too sick. I was in the hospital all the time. So
Jenny Jones:I didn't always get to go to school the way you know, like I
Jenny Jones:should have been able to go to but they did a lot of
Jenny Jones:commendations for me too. So I got a lot of support from school
Jenny Jones:and that's when I started I started going to counselling in
Jenny Jones:high school. So mentally, I started to try to process some
Jenny Jones:of what it was going on and learn healthier coping skills
Jenny Jones:and still working on all of that, but I'm much better at
Jenny Jones:handling medical things that I used to be it's been a long
Jenny Jones:process
Howard Brown:I was like you've got the process you're working
Howard Brown:at it, which is great. And as you've now proceeded, you're
Howard Brown:doing something about it, you've turned kind of your your lessons
Howard Brown:learned into advocacy into education and awareness. So
Howard Brown:that's that's really kind of amazing that you've been able to
Howard Brown:do that. So that's really kind of the next step. So share with
Howard Brown:me more about your advocacy efforts, your speaking and
Howard Brown:educating people because I you know, there's There's quite a
Howard Brown:few rare diseases I had not until mid meeting, you know,
Howard Brown:knew about this shout out to colin town because we are
Howard Brown:connected via colon town, which I'm really happy about getting
Howard Brown:the support there as a patient in my wife as a caregiver, and I
Howard Brown:know you are, too. And so it's good to find people that you can
Howard Brown:be understood by and that no, you know, are dealing with this
Howard Brown:stuff. And it's, it's hard. But so, so how did you kind of go
Howard Brown:from, you know, this little girl that had life threatening, you
Howard Brown:know, that had some trauma, you're trying to process it, you
Howard Brown:had some counselling. And now you're kind of like, you know,
Howard Brown:carrying the flag advocacy, tell me about that journey.
Jenny Jones:It has been insane, because it's, um, I was
Jenny Jones:extremely shy, I did not, I didn't want anybody to know
Jenny Jones:anything about me, I didn't want, you know, I didn't want to
Jenny Jones:even want to know that I was in the hospital or I had a health
Jenny Jones:issue or anything like that. After my first surgery, I went
Jenny Jones:actually from like a really bubbly little kid that was like,
Jenny Jones:very trusting or just open to people to just extremely
Jenny Jones:excruciating, shy. And I carried that into me, you know, or kind
Jenny Jones:of along with me, and even, like in college and things I didn't
Jenny Jones:want people to know about my health. And then I started life,
Jenny Jones:the polyp. And over time, now I'm on the rooftops, shouting
Jenny Jones:anything about that can raise awareness, I share embarrassing
Jenny Jones:things about what happens with your body when you don't have
Jenny Jones:all your organs. And I don't even I mean, I don't care
Jenny Jones:anymore. It's, it's fine. You know, it's, it's sure it sucks.
Jenny Jones:But I don't care if people know that. Because it's raising
Jenny Jones:awareness, I don't have to worry about that anymore. And that's
Jenny Jones:been, it's just such a huge change that I've gone through
Jenny Jones:from. And even when I started my blog, it was anonymous, I didn't
Jenny Jones:want people to know who I was. And it was kind of funny,
Jenny Jones:because this lady from Michael's mission, she decided that she
Jenny Jones:was going to try to figure out who I was, so she could contact
Jenny Jones:me because I didn't have any way you could contact me or
Jenny Jones:anything. And she did a lot of research. And she found and she
Jenny Jones:actually helped give me that that nudge and that support to
Jenny Jones:start increasing my confidence and my in myself, myself love to
Jenny Jones:even put a face to a name and raise more awareness that way.
Howard Brown:I appreciate that. Because people can choose I
Howard Brown:respect people that want to keep their journey quiet, it's
Howard Brown:totally up to them. I like you, you know, carry the flag,
Howard Brown:advocate for screening for for patients rights, patients
Howard Brown:expertise being included, you know, in clinical trials. And so
Howard Brown:I agree, once you come out as that advocate, you are known,
Howard Brown:you build a brand. And people do know you and they look to you
Howard Brown:for expertise and information. And they jump on board. And so
Howard Brown:that has to be a conscious decision. So from a shy little
Howard Brown:girl that you know, was carrying a lot of pain and a lot of
Howard Brown:secrets. You're you're now you know leading a movement. And I
Howard Brown:want to tell you, I'm very proud of you. And it's an important
Howard Brown:movement, because people need to get trained screen and they need
Howard Brown:to get checked out and people they need to be believed. And
Howard Brown:it's hard. There's a lot of distrust in the medical system,
Howard Brown:you develop some. And there's people like me, who had just I
Howard Brown:mostly for the most part of my two cancers, I've had very good
Howard Brown:care. And so I've been fortunate that way. I know. It's not
Howard Brown:always the case, with many, many people and things like that. And
Howard Brown:so, so tell me now take me through. So from where where are
Howard Brown:things now? Where's the advocacy? How has it evolved?
Howard Brown:And how has it changed over time?
Jenny Jones:So it started with just the blog, but then I
Jenny Jones:started doing I got on Facebook, I slowly started doing social
Jenny Jones:media. So I'm on all the different social media things.
Jenny Jones:We've talked about the research fund. Well and then I'm doing
Jenny Jones:podcasts now and I'm I've gotten to I had an article published in
Jenny Jones:the elephants and teen magazine or cancer issue. This year. That
Jenny Jones:was very exciting. And I even applied to be a speaker at the
Jenny Jones:Nord living where a forum next year so fingers crossed. But I'm
Jenny Jones:just I look for any avenues opportunities, and I'm open to
Jenny Jones:pretty much anything anymore. Now I I wrote my children's book
Jenny Jones:I am looking to, I've got two more I want to do for I want to
Jenny Jones:make it into a series with my publisher. Um, but yeah, I just
Jenny Jones:kind of anything that pops up, I'm like, oh, let's try that. So
Jenny Jones:I'm always open to ideas.
Howard Brown:Well, I want to share your story to my audience,
Howard Brown:and it's important for people to know that as well. So what's the
Howard Brown:some of the biggest lessons you've learned so far? As you
Howard Brown:know, really going forward and advocating for, for rare
Howard Brown:disorders and diseases and what is what are big some aha
Howard Brown:moments?
Jenny Jones:Oh, with my advocacy, I learned about just
Jenny Jones:how life changing community can be. Because that's the thing
Jenny Jones:with rare diseases, we often feel so isolated. So, and that's
Jenny Jones:how I felt growing up in, it was when you can say it was
Jenny Jones:suffocating it was, I hurt so long because I didn't have
Jenny Jones:anyone outside of my family. And I was angry with my family
Jenny Jones:because I blamed them for my rare disease. So it was kind of
Jenny Jones:I had support, but I didn't use it. And over time, I have
Jenny Jones:processed all that and I don't blame anybody for it anymore.
Jenny Jones:But I found online community through my advocacy and it's,
Jenny Jones:it's been life changing and life saving even like, it's just it
Jenny Jones:makes a huge difference. And then, of course, your own
Jenny Jones:personal advocacy with your medical care, like that's
Jenny Jones:especially with rare disease, because there's so many doctors,
Jenny Jones:so many people, providers that don't know anything about it.
Jenny Jones:And they're just kind of winging it the best they can sometimes
Jenny Jones:they do. They do,
Howard Brown:I will tell you that I take great pride, I have
Howard Brown:a download from my website called mentorship is leadership.
Howard Brown:And I now that I'm looked at as an as an advocate, patient
Howard Brown:expert and leader, I actually mentor cancer patients that are
Howard Brown:five steps behind that. Have questions, right. And so I find
Howard Brown:that to be just really important give back because they want to
Howard Brown:get to where I am, which is no evidence of disease. That's what
Howard Brown:everybody wants to get to, right you want to live, you know, you
Howard Brown:want to live. And, you know, getting that cancer diagnosis.
Howard Brown:My friend Leif Silverstein says we have cancer, it's not, you
Howard Brown:know, you have it alone. And isolation is a big deal. And in
Howard Brown:my book, I refer to that as darkness. That's the darkness
Howard Brown:that you can walk in. And if you stay there too long in darkness,
Howard Brown:bad things can happen. Depression can happen, anxiety
Howard Brown:can happen. potentially even worse, drug addiction or, or
Howard Brown:getting physically abusive or anger management, all sorts of
Howard Brown:stuff can happen. So you got to stay there a little bit and
Howard Brown:learn from it. But then you have to use your light. And the best
Howard Brown:way that I know to use your light is to go lift someone else
Howard Brown:up, because it takes the spotlight off yourself and you
Howard Brown:lift someone else up. And the endorphins are charging, and
Howard Brown:they are grateful. And then you can come back to focus on
Howard Brown:yourself. But you've done that. So I find that to be very good
Howard Brown:tool to go. When you're in that darkness to go try to help
Howard Brown:somebody else. And then by doing so you're actually are helping
Howard Brown:yourself as well. So it's super, super important there. So I'm
Howard Brown:sure there's people coming to you all the time that are
Howard Brown:looking for community are looking for that one on one
Howard Brown:mentorship, and it's important to carry that forward.
Jenny Jones:It is and it's it's it's like an obsession or
Jenny Jones:compulsion even now, like it's, you know, like my partner who'd
Jenny Jones:be like, Why don't you stop? Like, you don't have the answer.
Jenny Jones:And they might know like, if there's something I can help
Jenny Jones:somebody with, like I have to like, it's like, you just can't
Jenny Jones:ignore it, you know, it's.
Howard Brown:And again, we have resources that we know of that
Howard Brown:we can connect people up with. It always doesn't fall just on
Howard Brown:ourselves as well. You tell me about the book, I want to hear
Howard Brown:about your children's book, and I want to hear about your shop,
Howard Brown:I want to hear about how this how you decided to do that.
Howard Brown:Because, you know, that's a very cool skill. Now that I'm
Howard Brown:published, I understand the work it takes to get there. But a
Howard Brown:children's book is special. And so tell me tell me all about
Howard Brown:that.
Jenny Jones:Well, so it started with a few years ago, a lady
Jenny Jones:reached out to me and she asked for a tattoo idea for FAAP. And
Jenny Jones:she wanted to be cryptic. So I came up with some different
Jenny Jones:ideas. And she got one of them as a tattoo. And the one she
Jenny Jones:chose was I said she's sleeping mutant. And so it because we
Jenny Jones:have a genetic mutation. And so a few years ago, I got I had
Jenny Jones:week I got connected with we go help, which is now health union.
Jenny Jones:And I had submitted my medical story to be in a book about
Jenny Jones:chronic illness and it was accepted. And part of that was
Jenny Jones:that I was able to get connected with the publisher and I could
Jenny Jones:present my own book idea. And so it sparked this idea of mutants
Jenny Jones:and children's book and it became kind of a family affair
Jenny Jones:between my partner I and his son and so we made this book and he
Jenny Jones:actually the two main characters are inspired from his drawings
Jenny Jones:that he did for me. The main character And so he just kind of
Jenny Jones:we walked through like, these are the different through
Jenny Jones:different characters and their experiences with F AP and what
Jenny Jones:they experience, what you might experience what it is, what to
Jenny Jones:expect and things to help cope with that. And it's just it's
Jenny Jones:one of those things with the idea that, yes, this can help
Jenny Jones:children understand FAAP whether they have it themselves, or it's
Jenny Jones:a feeling member that has as it and just something to try to
Jenny Jones:help children process to understand it a bit better.
Howard Brown:Your book cover up for those that will be viewing.
Howard Brown:Yeah. froze just for a secondary go. Hold it up. There you go.
Howard Brown:Yeah.
Jenny Jones:Get the angle. Right. Awesome. And who did the
Jenny Jones:Who do you deal? Yeah, it's good. To seek and this is Katie
Jenny Jones:and my, my stepson. He drew the characters to inspire these ones
Jenny Jones:for me.
Howard Brown:And those are genetic mutations. Love it.
Jenny Jones:Yeah. They're the mutant.
Howard Brown:Yeah. Oh, my God, we're really cool. Oh, I'm
Howard Brown:looking forward to the series. That's really great. Yeah, thank
Howard Brown:you for sharing that. I'll definitely will share it, we'll
Howard Brown:share that people can buy your book and all that as well.
Howard Brown:That's, that's really good. And have you spoken, you know, in
Howard Brown:health care's or to parents or kids about it? Have you gone
Howard Brown:into the classroom? Or how are you getting the word out?
Jenny Jones:No, it's Will's family kind of just through
Jenny Jones:through my own advocacy efforts, or the communities, the online
Jenny Jones:communities, I have gone to some different little, those little
Jenny Jones:free library that people put up and like, you know, stores are
Jenny Jones:in the neighbourhoods, I've put some they're donated to there to
Jenny Jones:kind of help especially because they don't always have
Jenny Jones:children's books on those. So that's one thing and then I do
Jenny Jones:donate a portion of the book sells to the north FFP Research
Jenny Jones:Fund, and I donate all of the shop proceeds to the what's in
Jenny Jones:the shop. So I have I have opened, I have many different
Jenny Jones:designs, and it ranges from Rare Disease FAAP chronic illness,
Jenny Jones:and I have all these different types of products, clothing,
Jenny Jones:drinkware, coats bags, I got a pet sweater or something, a pet
Jenny Jones:shirt in there. And that one, all the things that's what I
Jenny Jones:started with. When I started the font, the research fun, I did my
Jenny Jones:first T shirt fundraiser, and then I thought, Okay, we got to
Jenny Jones:keep this going. So I created the shop, and I put that design
Jenny Jones:in there, which is my, the front says it's hard to be rare, but
Jenny Jones:someone's got to do it. And then it has FHP information on the
Jenny Jones:back. So I have different all kinds of different designs. And
Jenny Jones:my partner helps me with that, because he's a graphic designer.
Jenny Jones:So he's, he helps create new designs for me.
Howard Brown:That's, that's really cool. I will tell you
Howard Brown:that. Because I you know, I know about disorders like Lynch
Howard Brown:syndrome. And when I grew up Tay Sachs was a genetic thing that
Howard Brown:you got tested for and things like that. And it's really all
Howard Brown:about the education. It really is. And I am a huge proponent of
Howard Brown:cancer screening and getting your meat you know, genetics
Howard Brown:done as well. I mean, in COVID, we didn't have you know, we
Howard Brown:missed that some of those opportunities for women to get
Howard Brown:their mammogram, go to their lady doctor for guys to go to
Howard Brown:get their prostate checked to do a colonoscopy or a FIT test or a
Howard Brown:cologuard test. It's just so important to be able to get
Howard Brown:screened, because I can tell you this that I got screened at age
Howard Brown:50. Now the screening age is 45 I still think it's a little too
Howard Brown:high. You know, they say young onset, colorectal cancer is now
Howard Brown:50 and under, well 50s too. It's too old enough already. If it
Howard Brown:was if I would have got screened at age 40 Jenny, I would have
Howard Brown:had either an early stage one diagnosis or no colon cancer
Howard Brown:just would have sniffed a polyp and went on with my life. But
Howard Brown:instead at age 58 and a half centimetres, it took 10 years to
Howard Brown:grow to eight NAFSA tumour in my intestine, you know, like cecum
Howard Brown:and then this started the whole ball of wax because lymph nodes
Howard Brown:are positive surgeries, hemicolectomy chemo therapies,
Howard Brown:side effects, more surgery, clinical trials, all the way
Jenny Jones:Really. And that's the thing like even with mine
Jenny Jones:too like is not with FAP typically is like when you're a
Jenny Jones:leading to my craziness where I had the hot chemo batha
Jenny Jones:teenager is when you start to have the polyp issues. Mine
Jenny Jones:cytoreduction Hypex surgery so screening is so important. I
Jenny Jones:started I was diagnosed at eight I had in my colon out my nine
Jenny Jones:mean, the stuff that you and I have been through. We don't wish
Jenny Jones:because my publisher starting to turn cancerous and the primary
Jenny Jones:that on anybody. I don't want anybody to go through that hell,
Jenny Jones:didn't want to do anything about it to find out anything. It's
Jenny Jones:it's terrible.
Jenny Jones:incredible and use it like the 45 is still is too Do old, I
Jenny Jones:absolutely agree with you. And I know the NCCN guidelines for
Jenny Jones:FAAP surveillance is to do a colonoscopy starting that 10
Jenny Jones:Unless you're symptomatic, and I'm like, That's too old. That's
Jenny Jones:too could be too old. Yeah, it did. Because I didn't actually
Jenny Jones:have symptoms of my polyp polyps. My pain was because I
Jenny Jones:was such a stressed out child that I was developing ulcers.
Jenny Jones:But if I hadn't been, I mean, who knows when they would have
Jenny Jones:found out? Yeah, no, no, I think early detection is really
Jenny Jones:important and getting diagnosed correctly. It's really really
Jenny Jones:important. Wow. So we you pronounce this FAAP is stands
Jenny Jones:for the male, I don't know. Metis polyposis.
Howard Brown:Okay, we're gonna put links all over the website
Howard Brown:and all over the show notes and all over the one I posted on
Howard Brown:socials, because I want people to be aware of that. Education
Howard Brown:is so key. So we're going to make awareness and education,
Howard Brown:the primary point there. Alright, so here's what we're
Howard Brown:going to do. Now. This is a cool part of the show. We're going to
Howard Brown:shine brightly on you. So the spotlight the shining, bright
Howard Brown:light spot, yeas on you and your book, Jenny, tell people how the
Howard Brown:best way they can get a hold of you. Anything else that you want
Howard Brown:to share that we haven't covered? And a little
Howard Brown:inspiration for us?
Jenny Jones:Okay, well, so I have my website is life
Jenny Jones:support.com. I'm on all the social media platforms. My
Jenny Jones:handle is Liza Polvoron. Every single one of them. That
Jenny Jones:includes YouTube, LinkedIn, I do touch in Facebook are the two
Jenny Jones:primary social media things that I do there. And then I also add
Jenny Jones:all my all my links are on my website to life support.com.
Jenny Jones:Yeah, so incredible. All right, a little inspiration for us.
Jenny Jones:Well, you know, I mentioned before about community being so
Jenny Jones:important, and the thing is, that community is a lot larger
Jenny Jones:than we realise, including for FAAP, not just rare disease in
Jenny Jones:general. But even the FA P community is a lot bigger than
Jenny Jones:we think it is. And that makes such a huge difference in our
Jenny Jones:rare disease care, mentally and physically. And if you're having
Jenny Jones:trouble finding community, reach out to me, I'm going to help you
Jenny Jones:get connected because we're here. We want to help you
Jenny Jones:embrace you. We don't want you to be alone. We know what that's
Jenny Jones:like, we don't want to be alone.
Howard Brown:No isolation. Don't be alone. I love it. Thank
Howard Brown:you for that inspiration. You don't have to do this alone. I
Howard Brown:really appreciate those words. Well, this has been an amazing
Howard Brown:show with an amazing young woman that is doing amazing things.
Howard Brown:And we are so glad that you're here and you've chosen advocacy
Howard Brown:and and to share your story. So this is Howard Brown, and the
Howard Brown:shining, brightly podcast is just, it's growing so much. Lots
Howard Brown:of downloads, lots of listeners, and we're very appreciative of
Howard Brown:that. On my website, you can reach me at shining brightly.com
Howard Brown:You can check me out for speaking gigs. My advocacy work
Howard Brown:in cancer and entrepreneurship in an interfaith work. There's
Howard Brown:discussion guides to download as well. And obviously my book
Howard Brown:shining brightly doing great out there and it's it's helped
Howard Brown:changing lives, with kindness and with hope. And if we choose
Howard Brown:to shine brightly, just a little bit each day for ourselves, for
Howard Brown:others, for our neighbourhoods, our communities, the world will
Howard Brown:become a better place. Thank you, Jenny. loved having you.
Jenny Jones:Thank you