- 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.

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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

Podcast Show. Oh, I have another good show for you. The spotlight

will be shining on a very special person. I'd like to

welcome Jenny Jones. How are you, Jenny? Welcome to the show.

I'm good. How are you doing? I'm great.

It's great to see you. Oh, my God, I just we have

so many good things to talk about. And to do some advocacy

tonight. And we're going to talk about your your book and all

that as well. Let me let me read a little bit about you and and

share with my audience who you are. Jenny is a rare disease

advocate. Now I'm gonna mess this up. You're gonna help me

right now. But familial adenomatous poly, poly pop

cysts. Now you say it the right way.

Familial Adenomatous Polyposis (FAP)

Okay, and short bowel syndrome. Thank you for the assist. Okay.

Her surgeries reported related to FA p. So that's the

abbreviation started at age nine as just a young, young little

girl. And after spirits in life threatening complications.

You've developed medical, PTSD, I have it to its chemo brain or

brain fog. You've lived with an ileostomy. And for six years and

you had it reversed, and you survived eight surgeries to

date. Wow. through life's a polyp, you focus on raising

awareness and patient empowerment. And you started the

Nord fat and the Nord is the national organisation for Rare

Disorders Research Fund in 2015. And you donate profits from your

book Life Cipolla shop and the children's book. And it's life's

Apollo with Zeke and Katie. So this is incredible you are

you've been through a lot, and we're gonna get into that.

Before we do that, what's something new or different that

people may not know about? You'd like to share?

You know, I, I write a lot for life support.

But I also really love writing poetry. And I used to love to go

to like the poetry nights, the mic nights. I haven't done that

in a while. But I like to do that. So poetry is your happy

place. So I tell people mines in basketball court, I tell people

find your happy place that stress free zone and go there.

It can be cooking, it can be art, it can be yoga, it can be

hiking, it can be something athletic, it can be travel,

there's lots of things to find, but find your happy place.

So I'm so glad that yours is poetry. That's

amazing. All right, let's let's dig in a little bit. And we're

going to do is, take me through first. Okay, a little bit about

you know, the Nord fab, you know, the research fund, and why

you created it.

You know, it's kind of funny, I don't even remember

exactly what led me specifically, there was a

turning point, I remember it was in 2015. That's when I started

the SAP research fund with Nord. And I think I just, I had

started my my life apolip blog in 2012. And by 2015, I think I

was just like, I need to do more, there's something I need

to do more. And I started researching where I could do

start a research fund with and I chose Nord and I did a big T

shirt fundraiser, to start to launch it as a as an exciting

thing. And it's become one of my life, passions, my life goals to

fully fund this research fund. So it can be used at least one

time for a research grant.

I think it's amazing. And it's really a great

cause that I was unaware of. And also, in doing some research

with you a little bit, we discovered that rare gi diseases

and disorders affects 300 million people globally. That's

an astonishing number. It's an absolutely astonishing number.

It is and then FAP in the US is one in eight people. That's

incredible.

Yeah, it's well not when when

1 in 8000 people that's incredible. It's still a

very small number, you know, people compared to that can get

into it one in 8000 can actually get the you know, Polly Pope

says if I'm pronouncing Are you still gotta help me. All right.

So But now, the thing is, is that you kind of went

undiagnosed and it was a real long journey, but But at age

nine,

my first surgery and how old you age nine or

age nine, are you in like fourth grade?

Yeah. Yeah, I think I well, I was going into I think

I had my surgery at the end of fourth grade. Yeah.

So okay, so but but getting diagnosed, going

through the process of learning what you had, how long The

period of time was that

well, it was longest because I, we were on

HMO insurance plan. So we had to have a referral from the primary

care doctor and she didn't believe there was anything wrong

with me. She just thought I was whiny. So she refused to refer

me to a GI specialist for evaluation because I was having

chronic abdominal pain. And so my parents had to change

insurance plans, and they got me to this paediatric GI doctor who

was amazing. When she heard about my symptoms of with pain,

and she heard about my family history of FAAP. She immediately

was like, oh, no, we have to get you tested. We're doing an EGD.

We're doing colonoscopy, we're going to do genetic testing. So

if I had been able to get to her earlier, it would have not been

a hassle trying to get diagnosed or at least evaluated federal

was going on. But yeah, I had roadblocks with that primary

care, doctor.

You did. But all right, so you're a fourth

grader. You're diagnosed okay. And so what's, what's it like

being a child and the medical now I was 23 when I got

diagnosed with cancer, the first time for Stage Four non Hodgkins

lymphoma, I'm still more of an adult, right? You know, I'm 23.

Even almost a kid, but you're, you're nine years old. So what

was it like?

It was It was awful. So I had I mean, I had

gone to regular doctor's appointments and things. So I

wasn't completely new to medical care, but I had complications.

So I quickly got traumatised, I don't feel like I got good care

at the hospital that I was at. I was dismissed by other doctors

like when I was having my intestine had wrapped around

itself. And they dismissed me again to me, I was whiny. So I,

I was there was a lot that happened during that year. And

those those five surgeries that year, that were just extremely

traumatic. So I didn't trust providers anymore. And I

actually blamed my GI doctor for everything, as well as other

people in my life. So I didn't like any anybody I didn't, I

didn't like any providers, I didn't I. So I was I was really,

you had, they had to restrain me for IVs for my colonoscopies and

my ETDs. Afterwards, it was very difficult. I I had a lot of

depression, a lot of anger. And

I didn't do well with it at all. And even into high school, when

I started going to counselling, it got better. But it took years

before I could even step foot into the hospital that I go to

now, but it started in high school with before I had pain,

stop having panic attacks from going inside certain areas of

the hospital, I can understand that was your mom, your parents

who was your caregiver. And my parents were in actually because

my dad worked and my mom has, she has the same very diseases

that I have and health issues. So my parents helped, um, they

help they raised me, but then they also had help from my

grandfather and three of my aunts. And so they basically

helped raise me to,

you did have support, family support, which

is really important. But still you didn't not knowing and then

all of a sudden, you know, going through this is it's a lot for a

little kid, I can tell you that. Now, as you've grown older,

okay. You told me that high school years were normalised as

much as possible or not, not exactly.

Half and half, about half of them were and then

when I had my ileostomy reversed in high school, I had

complications. And so the rest of that was when I was 15. And

so I had life threatening, life threatening complications.

Again, it was very, we kept it as normal as possible, but I was

I had to be schooled that home for part of it because I

couldn't, I was too sick. I was in the hospital all the time. So

I didn't always get to go to school the way you know, like I

should have been able to go to but they did a lot of

commendations for me too. So I got a lot of support from school

and that's when I started I started going to counselling in

high school. So mentally, I started to try to process some

of what it was going on and learn healthier coping skills

and still working on all of that, but I'm much better at

handling medical things that I used to be it's been a long

process

I was like you've got the process you're working

at it, which is great. And as you've now proceeded, you're

doing something about it, you've turned kind of your your lessons

learned into advocacy into education and awareness. So

that's that's really kind of amazing that you've been able to

do that. So that's really kind of the next step. So share with

me more about your advocacy efforts, your speaking and

educating people because I you know, there's There's quite a

few rare diseases I had not until mid meeting, you know,

knew about this shout out to colin town because we are

connected via colon town, which I'm really happy about getting

the support there as a patient in my wife as a caregiver, and I

know you are, too. And so it's good to find people that you can

be understood by and that no, you know, are dealing with this

stuff. And it's, it's hard. But so, so how did you kind of go

from, you know, this little girl that had life threatening, you

know, that had some trauma, you're trying to process it, you

had some counselling. And now you're kind of like, you know,

carrying the flag advocacy, tell me about that journey.

It has been insane, because it's, um, I was

extremely shy, I did not, I didn't want anybody to know

anything about me, I didn't want, you know, I didn't want to

even want to know that I was in the hospital or I had a health

issue or anything like that. After my first surgery, I went

actually from like a really bubbly little kid that was like,

very trusting or just open to people to just extremely

excruciating, shy. And I carried that into me, you know, or kind

of along with me, and even, like in college and things I didn't

want people to know about my health. And then I started life,

the polyp. And over time, now I'm on the rooftops, shouting

anything about that can raise awareness, I share embarrassing

things about what happens with your body when you don't have

all your organs. And I don't even I mean, I don't care

anymore. It's, it's fine. You know, it's, it's sure it sucks.

But I don't care if people know that. Because it's raising

awareness, I don't have to worry about that anymore. And that's

been, it's just such a huge change that I've gone through

from. And even when I started my blog, it was anonymous, I didn't

want people to know who I was. And it was kind of funny,

because this lady from Michael's mission, she decided that she

was going to try to figure out who I was, so she could contact

me because I didn't have any way you could contact me or

anything. And she did a lot of research. And she found and she

actually helped give me that that nudge and that support to

start increasing my confidence and my in myself, myself love to

even put a face to a name and raise more awareness that way.

I appreciate that. Because people can choose I

respect people that want to keep their journey quiet, it's

totally up to them. I like you, you know, carry the flag,

advocate for screening for for patients rights, patients

expertise being included, you know, in clinical trials. And so

I agree, once you come out as that advocate, you are known,

you build a brand. And people do know you and they look to you

for expertise and information. And they jump on board. And so

that has to be a conscious decision. So from a shy little

girl that you know, was carrying a lot of pain and a lot of

secrets. You're you're now you know leading a movement. And I

want to tell you, I'm very proud of you. And it's an important

movement, because people need to get trained screen and they need

to get checked out and people they need to be believed. And

it's hard. There's a lot of distrust in the medical system,

you develop some. And there's people like me, who had just I

mostly for the most part of my two cancers, I've had very good

care. And so I've been fortunate that way. I know. It's not

always the case, with many, many people and things like that. And

so, so tell me now take me through. So from where where are

things now? Where's the advocacy? How has it evolved?

And how has it changed over time?

So it started with just the blog, but then I

started doing I got on Facebook, I slowly started doing social

media. So I'm on all the different social media things.

We've talked about the research fund. Well and then I'm doing

podcasts now and I'm I've gotten to I had an article published in

the elephants and teen magazine or cancer issue. This year. That

was very exciting. And I even applied to be a speaker at the

Nord living where a forum next year so fingers crossed. But I'm

just I look for any avenues opportunities, and I'm open to

pretty much anything anymore. Now I I wrote my children's book

I am looking to, I've got two more I want to do for I want to

make it into a series with my publisher. Um, but yeah, I just

kind of anything that pops up, I'm like, oh, let's try that. So

I'm always open to ideas.

Well, I want to share your story to my audience,

and it's important for people to know that as well. So what's the

some of the biggest lessons you've learned so far? As you

know, really going forward and advocating for, for rare

disorders and diseases and what is what are big some aha

moments?

Oh, with my advocacy, I learned about just

how life changing community can be. Because that's the thing

with rare diseases, we often feel so isolated. So, and that's

how I felt growing up in, it was when you can say it was

suffocating it was, I hurt so long because I didn't have

anyone outside of my family. And I was angry with my family

because I blamed them for my rare disease. So it was kind of

I had support, but I didn't use it. And over time, I have

processed all that and I don't blame anybody for it anymore.

But I found online community through my advocacy and it's,

it's been life changing and life saving even like, it's just it

makes a huge difference. And then, of course, your own

personal advocacy with your medical care, like that's

especially with rare disease, because there's so many doctors,

so many people, providers that don't know anything about it.

And they're just kind of winging it the best they can sometimes

they do. They do,

I will tell you that I take great pride, I have

a download from my website called mentorship is leadership.

And I now that I'm looked at as an as an advocate, patient

expert and leader, I actually mentor cancer patients that are

five steps behind that. Have questions, right. And so I find

that to be just really important give back because they want to

get to where I am, which is no evidence of disease. That's what

everybody wants to get to, right you want to live, you know, you

want to live. And, you know, getting that cancer diagnosis.

My friend Leif Silverstein says we have cancer, it's not, you

know, you have it alone. And isolation is a big deal. And in

my book, I refer to that as darkness. That's the darkness

that you can walk in. And if you stay there too long in darkness,

bad things can happen. Depression can happen, anxiety

can happen. potentially even worse, drug addiction or, or

getting physically abusive or anger management, all sorts of

stuff can happen. So you got to stay there a little bit and

learn from it. But then you have to use your light. And the best

way that I know to use your light is to go lift someone else

up, because it takes the spotlight off yourself and you

lift someone else up. And the endorphins are charging, and

they are grateful. And then you can come back to focus on

yourself. But you've done that. So I find that to be very good

tool to go. When you're in that darkness to go try to help

somebody else. And then by doing so you're actually are helping

yourself as well. So it's super, super important there. So I'm

sure there's people coming to you all the time that are

looking for community are looking for that one on one

mentorship, and it's important to carry that forward.

It is and it's it's it's like an obsession or

compulsion even now, like it's, you know, like my partner who'd

be like, Why don't you stop? Like, you don't have the answer.

And they might know like, if there's something I can help

somebody with, like I have to like, it's like, you just can't

ignore it, you know, it's.

And again, we have resources that we know of that

we can connect people up with. It always doesn't fall just on

ourselves as well. You tell me about the book, I want to hear

about your children's book, and I want to hear about your shop,

I want to hear about how this how you decided to do that.

Because, you know, that's a very cool skill. Now that I'm

published, I understand the work it takes to get there. But a

children's book is special. And so tell me tell me all about

that.

Well, so it started with a few years ago, a lady

reached out to me and she asked for a tattoo idea for FAAP. And

she wanted to be cryptic. So I came up with some different

ideas. And she got one of them as a tattoo. And the one she

chose was I said she's sleeping mutant. And so it because we

have a genetic mutation. And so a few years ago, I got I had

week I got connected with we go help, which is now health union.

And I had submitted my medical story to be in a book about

chronic illness and it was accepted. And part of that was

that I was able to get connected with the publisher and I could

present my own book idea. And so it sparked this idea of mutants

and children's book and it became kind of a family affair

between my partner I and his son and so we made this book and he

actually the two main characters are inspired from his drawings

that he did for me. The main character And so he just kind of

we walked through like, these are the different through

different characters and their experiences with F AP and what

they experience, what you might experience what it is, what to

expect and things to help cope with that. And it's just it's

one of those things with the idea that, yes, this can help

children understand FAAP whether they have it themselves, or it's

a feeling member that has as it and just something to try to

help children process to understand it a bit better.

Your book cover up for those that will be viewing.

Yeah. froze just for a secondary go. Hold it up. There you go.

Yeah.

Get the angle. Right. Awesome. And who did the

Who do you deal? Yeah, it's good. To seek and this is Katie

and my, my stepson. He drew the characters to inspire these ones

for me.

And those are genetic mutations. Love it.

Yeah. They're the mutant.

Yeah. Oh, my God, we're really cool. Oh, I'm

looking forward to the series. That's really great. Yeah, thank

you for sharing that. I'll definitely will share it, we'll

share that people can buy your book and all that as well.

That's, that's really good. And have you spoken, you know, in

health care's or to parents or kids about it? Have you gone

into the classroom? Or how are you getting the word out?

No, it's Will's family kind of just through

through my own advocacy efforts, or the communities, the online

communities, I have gone to some different little, those little

free library that people put up and like, you know, stores are

in the neighbourhoods, I've put some they're donated to there to

kind of help especially because they don't always have

children's books on those. So that's one thing and then I do

donate a portion of the book sells to the north FFP Research

Fund, and I donate all of the shop proceeds to the what's in

the shop. So I have I have opened, I have many different

designs, and it ranges from Rare Disease FAAP chronic illness,

and I have all these different types of products, clothing,

drinkware, coats bags, I got a pet sweater or something, a pet

shirt in there. And that one, all the things that's what I

started with. When I started the font, the research fun, I did my

first T shirt fundraiser, and then I thought, Okay, we got to

keep this going. So I created the shop, and I put that design

in there, which is my, the front says it's hard to be rare, but

someone's got to do it. And then it has FHP information on the

back. So I have different all kinds of different designs. And

my partner helps me with that, because he's a graphic designer.

So he's, he helps create new designs for me.

That's, that's really cool. I will tell you

that. Because I you know, I know about disorders like Lynch

syndrome. And when I grew up Tay Sachs was a genetic thing that

you got tested for and things like that. And it's really all

about the education. It really is. And I am a huge proponent of

cancer screening and getting your meat you know, genetics

done as well. I mean, in COVID, we didn't have you know, we

missed that some of those opportunities for women to get

their mammogram, go to their lady doctor for guys to go to

get their prostate checked to do a colonoscopy or a FIT test or a

cologuard test. It's just so important to be able to get

screened, because I can tell you this that I got screened at age

50. Now the screening age is 45 I still think it's a little too

high. You know, they say young onset, colorectal cancer is now

50 and under, well 50s too. It's too old enough already. If it

was if I would have got screened at age 40 Jenny, I would have

had either an early stage one diagnosis or no colon cancer

just would have sniffed a polyp and went on with my life. But

instead at age 58 and a half centimetres, it took 10 years to

grow to eight NAFSA tumour in my intestine, you know, like cecum

and then this started the whole ball of wax because lymph nodes

are positive surgeries, hemicolectomy chemo therapies,

side effects, more surgery, clinical trials, all the way

Really. And that's the thing like even with mine

too like is not with FAP typically is like when you're a

leading to my craziness where I had the hot chemo batha

teenager is when you start to have the polyp issues. Mine

cytoreduction Hypex surgery so screening is so important. I

started I was diagnosed at eight I had in my colon out my nine

mean, the stuff that you and I have been through. We don't wish

because my publisher starting to turn cancerous and the primary

that on anybody. I don't want anybody to go through that hell,

didn't want to do anything about it to find out anything. It's

it's terrible.

incredible and use it like the 45 is still is too Do old, I

absolutely agree with you. And I know the NCCN guidelines for

FAAP surveillance is to do a colonoscopy starting that 10

Unless you're symptomatic, and I'm like, That's too old. That's

too could be too old. Yeah, it did. Because I didn't actually

have symptoms of my polyp polyps. My pain was because I

was such a stressed out child that I was developing ulcers.

But if I hadn't been, I mean, who knows when they would have

found out? Yeah, no, no, I think early detection is really

important and getting diagnosed correctly. It's really really

important. Wow. So we you pronounce this FAAP is stands

for the male, I don't know. Metis polyposis.

Okay, we're gonna put links all over the website

and all over the show notes and all over the one I posted on

socials, because I want people to be aware of that. Education

is so key. So we're going to make awareness and education,

the primary point there. Alright, so here's what we're

going to do. Now. This is a cool part of the show. We're going to

shine brightly on you. So the spotlight the shining, bright

light spot, yeas on you and your book, Jenny, tell people how the

best way they can get a hold of you. Anything else that you want

to share that we haven't covered? And a little

inspiration for us?

Okay, well, so I have my website is life

support.com. I'm on all the social media platforms. My

handle is Liza Polvoron. Every single one of them. That

includes YouTube, LinkedIn, I do touch in Facebook are the two

primary social media things that I do there. And then I also add

all my all my links are on my website to life support.com.

Yeah, so incredible. All right, a little inspiration for us.

Well, you know, I mentioned before about community being so

important, and the thing is, that community is a lot larger

than we realise, including for FAAP, not just rare disease in

general. But even the FA P community is a lot bigger than

we think it is. And that makes such a huge difference in our

rare disease care, mentally and physically. And if you're having

trouble finding community, reach out to me, I'm going to help you

get connected because we're here. We want to help you

embrace you. We don't want you to be alone. We know what that's

like, we don't want to be alone.

No isolation. Don't be alone. I love it. Thank

you for that inspiration. You don't have to do this alone. I

really appreciate those words. Well, this has been an amazing

show with an amazing young woman that is doing amazing things.

And we are so glad that you're here and you've chosen advocacy

and and to share your story. So this is Howard Brown, and the

shining, brightly podcast is just, it's growing so much. Lots

of downloads, lots of listeners, and we're very appreciative of

that. On my website, you can reach me at shining brightly.com

You can check me out for speaking gigs. My advocacy work

in cancer and entrepreneurship in an interfaith work. There's

discussion guides to download as well. And obviously my book

shining brightly doing great out there and it's it's helped

changing lives, with kindness and with hope. And if we choose

to shine brightly, just a little bit each day for ourselves, for

others, for our neighbourhoods, our communities, the world will

become a better place. Thank you, Jenny. loved having you.

Thank you