Episode 58

TURNING PAIN INTO PURPOSE With Jenny Jones

- 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

Transcript
Howard Brown:

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