TURNING PAIN INTO PURPOSE With Jenny Jones

Howard Brown: 00:00:00

It's Howard Brown. It's the Shining Brightly

Howard Brown: 00:00:07

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

Howard Brown: 00:00:12

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

Howard Brown: 00:00:15

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

Jenny Jones: 00:00:18

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

Howard Brown: 00:00:21

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

Howard Brown: 00:00:24

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

Howard Brown: 00:00:28

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

Howard Brown: 00:00:31

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

Howard Brown: 00:00:34

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

Howard Brown: 00:00:39

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

Howard Brown: 00:00:42

right now. But familial adenomatous poly, poly pop

Howard Brown: 00:00:48

cysts. Now you say it the right way.

Howard Brown: 00:00:50

Familial Adenomatous Polyposis (FAP)

Howard Brown: 00:00:55

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

Howard Brown: 00:00:59

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

Howard Brown: 00:01:03

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

Howard Brown: 00:01:07

girl. And after spirits in life threatening complications.

Howard Brown: 00:01:14

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

Howard Brown: 00:01:18

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

Howard Brown: 00:01:23

you had it reversed, and you survived eight surgeries to

Howard Brown: 00:01:27

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

Howard Brown: 00:01:32

awareness and patient empowerment. And you started the

Howard Brown: 00:01:37

Nord fat and the Nord is the national organisation for Rare

Howard Brown: 00:01:41

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

Howard Brown: 00:01:47

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

Howard Brown: 00:01:52

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

Howard Brown: 00:01:58

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

Howard Brown: 00:02:02

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

Howard Brown: 00:02:06

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

Jenny Jones: 00:02:09

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

Jenny Jones: 00:02:12

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

Jenny Jones: 00:02:17

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

Jenny Jones: 00:02:20

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

Jenny Jones: 00:02:25

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

Jenny Jones: 00:02:29

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

Jenny Jones: 00:02:33

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

Jenny Jones: 00:02:35

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

Jenny Jones: 00:02:38

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

Howard Brown: 00:02:40

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

Howard Brown: 00:02:43

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

Howard Brown: 00:02:47

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

Howard Brown: 00:02:55

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

Howard Brown: 00:02:58

you created it.

Jenny Jones: 00:03:00

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

Jenny Jones: 00:03:03

exactly what led me specifically, there was a

Jenny Jones: 00:03:06

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

Jenny Jones: 00:03:09

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

Jenny Jones: 00:03:13

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

Jenny Jones: 00:03:18

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

Jenny Jones: 00:03:21

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

Jenny Jones: 00:03:25

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

Jenny Jones: 00:03:29

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

Jenny Jones: 00:03:33

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

Jenny Jones: 00:03:39

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

Jenny Jones: 00:03:43

time for a research grant.

Howard Brown: 00:03:46

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

Howard Brown: 00:03:49

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

Howard Brown: 00:03:53

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

Howard Brown: 00:03:57

and disorders affects 300 million people globally. That's

Howard Brown: 00:04:02

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

Howard Brown: 00:04:05

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

Howard Brown: 00:04:12

incredible.

Jenny Jones: 00:04:13

Yeah, it's well not when when

Howard Brown: 00:04:16

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

Howard Brown: 00:04:20

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

Howard Brown: 00:04:24

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

Howard Brown: 00:04:28

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

Howard Brown: 00:04:31

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

Howard Brown: 00:04:36

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

Howard Brown: 00:04:39

nine,

Jenny Jones: 00:04:41

my first surgery and how old you age nine or

Howard Brown: 00:04:44

age nine, are you in like fourth grade?

Jenny Jones: 00:04:47

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

Jenny Jones: 00:04:51

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

Howard Brown: 00:04:55

So okay, so but but getting diagnosed, going

Howard Brown: 00:04:57

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

Howard Brown: 00:05:00

period of time was that

Jenny Jones: 00:05:01

well, it was longest because I, we were on

Jenny Jones: 00:05:04

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

Jenny Jones: 00:05:08

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

Jenny Jones: 00:05:11

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

Jenny Jones: 00:05:15

me to a GI specialist for evaluation because I was having

Jenny Jones: 00:05:18

chronic abdominal pain. And so my parents had to change

Jenny Jones: 00:05:22

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

Jenny Jones: 00:05:27

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

Jenny Jones: 00:05:31

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

Jenny Jones: 00:05:34

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

Jenny Jones: 00:05:37

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

Jenny Jones: 00:05:41

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

Jenny Jones: 00:05:46

a hassle trying to get diagnosed or at least evaluated federal

Jenny Jones: 00:05:50

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

Jenny Jones: 00:05:53

care, doctor.

Howard Brown: 00:05:54

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

Howard Brown: 00:05:56

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

Howard Brown: 00:06:03

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

Howard Brown: 00:06:07

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

Howard Brown: 00:06:10

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

Howard Brown: 00:06:14

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

Howard Brown: 00:06:18

was it like?

Jenny Jones: 00:06:20

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

Jenny Jones: 00:06:22

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

Jenny Jones: 00:06:24

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

Jenny Jones: 00:06:31

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

Jenny Jones: 00:06:37

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

Jenny Jones: 00:06:42

like when I was having my intestine had wrapped around

Jenny Jones: 00:06:45

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

Jenny Jones: 00:06:49

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

Jenny Jones: 00:06:53

those those five surgeries that year, that were just extremely

Jenny Jones: 00:06:55

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

Jenny Jones: 00:06:59

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

Jenny Jones: 00:07:03

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

Jenny Jones: 00:07:07

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

Jenny Jones: 00:07:13

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

Jenny Jones: 00:07:17

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

Jenny Jones: 00:07:24

depression, a lot of anger. And

Jenny Jones: 00:07:27

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

Jenny Jones: 00:07:30

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

Jenny Jones: 00:07:34

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

Jenny Jones: 00:07:37

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

Jenny Jones: 00:07:41

stop having panic attacks from going inside certain areas of

Jenny Jones: 00:07:45

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

Jenny Jones: 00:07:51

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

Jenny Jones: 00:07:54

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

Jenny Jones: 00:07:58

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

Jenny Jones: 00:08:02

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

Jenny Jones: 00:08:05

grandfather and three of my aunts. And so they basically

Jenny Jones: 00:08:09

helped raise me to,

Howard Brown: 00:08:11

you did have support, family support, which

Howard Brown: 00:08:14

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

Howard Brown: 00:08:18

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

Howard Brown: 00:08:22

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

Howard Brown: 00:08:26

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

Howard Brown: 00:08:30

much as possible or not, not exactly.

Jenny Jones: 00:08:34

Half and half, about half of them were and then

Jenny Jones: 00:08:37

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

Jenny Jones: 00:08:41

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

Jenny Jones: 00:08:46

so I had life threatening, life threatening complications.

Jenny Jones: 00:08:48

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

Jenny Jones: 00:08:53

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

Jenny Jones: 00:08:58

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

Jenny Jones: 00:09:02

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

Jenny Jones: 00:09:06

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

Jenny Jones: 00:09:08

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

Jenny Jones: 00:09:13

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

Jenny Jones: 00:09:16

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

Jenny Jones: 00:09:21

of what it was going on and learn healthier coping skills

Jenny Jones: 00:09:24

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

Jenny Jones: 00:09:29

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

Jenny Jones: 00:09:32

process

Howard Brown: 00:09:33

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

Howard Brown: 00:09:35

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

Howard Brown: 00:09:39

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

Howard Brown: 00:09:43

learned into advocacy into education and awareness. So

Howard Brown: 00:09:48

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

Howard Brown: 00:09:51

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

Howard Brown: 00:09:53

me more about your advocacy efforts, your speaking and

Howard Brown: 00:09:57

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

Howard Brown: 00:10:00

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

Howard Brown: 00:10:03

knew about this shout out to colin town because we are

Howard Brown: 00:10:06

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

Howard Brown: 00:10:10

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

Howard Brown: 00:10:12

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

Howard Brown: 00:10:17

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

Howard Brown: 00:10:21

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

Howard Brown: 00:10:25

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

Howard Brown: 00:10:30

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

Howard Brown: 00:10:33

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

Howard Brown: 00:10:35

carrying the flag advocacy, tell me about that journey.

Jenny Jones: 00:10:39

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

Jenny Jones: 00:10:42

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

Jenny Jones: 00:10:45

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

Jenny Jones: 00:10:48

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

Jenny Jones: 00:10:50

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

Jenny Jones: 00:10:55

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

Jenny Jones: 00:10:58

very trusting or just open to people to just extremely

Jenny Jones: 00:11:02

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

Jenny Jones: 00:11:07

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

Jenny Jones: 00:11:12

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

Jenny Jones: 00:11:15

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

Jenny Jones: 00:11:21

anything about that can raise awareness, I share embarrassing

Jenny Jones: 00:11:27

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

Jenny Jones: 00:11:30

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

Jenny Jones: 00:11:34

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

Jenny Jones: 00:11:39

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

Jenny Jones: 00:11:42

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

Jenny Jones: 00:11:44

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

Jenny Jones: 00:11:48

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

Jenny Jones: 00:11:51

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

Jenny Jones: 00:11:56

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

Jenny Jones: 00:12:01

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

Jenny Jones: 00:12:04

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

Jenny Jones: 00:12:06

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

Jenny Jones: 00:12:12

actually helped give me that that nudge and that support to

Jenny Jones: 00:12:17

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

Jenny Jones: 00:12:21

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

Howard Brown: 00:12:27

I appreciate that. Because people can choose I

Howard Brown: 00:12:31

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

Howard Brown: 00:12:33

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

Howard Brown: 00:12:38

advocate for screening for for patients rights, patients

Howard Brown: 00:12:42

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

Howard Brown: 00:12:46

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

Howard Brown: 00:12:50

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

Howard Brown: 00:12:54

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

Howard Brown: 00:12:59

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

Howard Brown: 00:13:02

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

Howard Brown: 00:13:05

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

Howard Brown: 00:13:08

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

Howard Brown: 00:13:11

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

Howard Brown: 00:13:16

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

Howard Brown: 00:13:20

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

Howard Brown: 00:13:23

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

Howard Brown: 00:13:27

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

Howard Brown: 00:13:30

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

Howard Brown: 00:13:33

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

Howard Brown: 00:13:38

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

Howard Brown: 00:13:42

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

Howard Brown: 00:13:45

And how has it changed over time?

Jenny Jones: 00:13:47

So it started with just the blog, but then I

Jenny Jones: 00:13:50

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

Jenny Jones: 00:13:55

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

Jenny Jones: 00:13:59

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

Jenny Jones: 00:14:02

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

Jenny Jones: 00:14:08

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

Jenny Jones: 00:14:12

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

Jenny Jones: 00:14:17

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

Jenny Jones: 00:14:23

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

Jenny Jones: 00:14:27

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

Jenny Jones: 00:14:31

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

Jenny Jones: 00:14:35

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

Jenny Jones: 00:14:39

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

Jenny Jones: 00:14:45

I'm always open to ideas.

Howard Brown: 00:14:48

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

Howard Brown: 00:14:50

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

Howard Brown: 00:14:57

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

Howard Brown: 00:15:00

know, really going forward and advocating for, for rare

Howard Brown: 00:15:03

disorders and diseases and what is what are big some aha

Howard Brown: 00:15:08

moments?

Jenny Jones: 00:15:10

Oh, with my advocacy, I learned about just

Jenny Jones: 00:15:13

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

Jenny Jones: 00:15:17

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

Jenny Jones: 00:15:20

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

Jenny Jones: 00:15:25

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

Jenny Jones: 00:15:29

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

Jenny Jones: 00:15:32

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

Jenny Jones: 00:15:36

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

Jenny Jones: 00:15:42

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

Jenny Jones: 00:15:45

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

Jenny Jones: 00:15:50

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

Jenny Jones: 00:15:55

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

Jenny Jones: 00:15:58

personal advocacy with your medical care, like that's

Jenny Jones: 00:16:01

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

Jenny Jones: 00:16:05

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

Jenny Jones: 00:16:08

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

Jenny Jones: 00:16:14

they do. They do,

Howard Brown: 00:16:16

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

Howard Brown: 00:16:19

a download from my website called mentorship is leadership.

Howard Brown: 00:16:23

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

Howard Brown: 00:16:28

expert and leader, I actually mentor cancer patients that are

Howard Brown: 00:16:32

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

Howard Brown: 00:16:38

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

Howard Brown: 00:16:42

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

Howard Brown: 00:16:45

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

Howard Brown: 00:16:48

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

Howard Brown: 00:16:53

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

Howard Brown: 00:16:56

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

Howard Brown: 00:17:00

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

Howard Brown: 00:17:04

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

Howard Brown: 00:17:08

bad things can happen. Depression can happen, anxiety

Howard Brown: 00:17:11

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

Howard Brown: 00:17:15

getting physically abusive or anger management, all sorts of

Howard Brown: 00:17:19

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

Howard Brown: 00:17:22

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

Howard Brown: 00:17:26

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

Howard Brown: 00:17:29

up, because it takes the spotlight off yourself and you

Howard Brown: 00:17:32

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

Howard Brown: 00:17:36

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

Howard Brown: 00:17:40

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

Howard Brown: 00:17:43

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

Howard Brown: 00:17:46

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

Howard Brown: 00:17:49

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

Howard Brown: 00:17:52

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

Howard Brown: 00:17:56

looking for community are looking for that one on one

Howard Brown: 00:17:58

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

Jenny Jones: 00:18:01

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

Jenny Jones: 00:18:05

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

Jenny Jones: 00:18:09

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

Jenny Jones: 00:18:11

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

Jenny Jones: 00:18:13

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

Jenny Jones: 00:18:18

ignore it, you know, it's.

Howard Brown: 00:18:20

And again, we have resources that we know of that

Howard Brown: 00:18:23

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

Howard Brown: 00:18:26

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

Howard Brown: 00:18:31

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

Howard Brown: 00:18:35

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

Howard Brown: 00:18:38

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

Howard Brown: 00:18:42

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

Howard Brown: 00:18:45

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

Howard Brown: 00:18:47

that.

Jenny Jones: 00:18:48

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

Jenny Jones: 00:18:52

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

Jenny Jones: 00:18:56

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

Jenny Jones: 00:19:01

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

Jenny Jones: 00:19:05

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

Jenny Jones: 00:19:12

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

Jenny Jones: 00:19:18

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

Jenny Jones: 00:19:21

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

Jenny Jones: 00:19:26

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

Jenny Jones: 00:19:30

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

Jenny Jones: 00:19:35

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

Jenny Jones: 00:19:41

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

Jenny Jones: 00:19:44

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

Jenny Jones: 00:19:51

actually the two main characters are inspired from his drawings

Jenny Jones: 00:19:56

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

Jenny Jones: 00:20:02

we walked through like, these are the different through

Jenny Jones: 00:20:05

different characters and their experiences with F AP and what

Jenny Jones: 00:20:09

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

Jenny Jones: 00:20:13

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

Jenny Jones: 00:20:19

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

Jenny Jones: 00:20:22

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

Jenny Jones: 00:20:26

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

Jenny Jones: 00:20:30

help children process to understand it a bit better.

Howard Brown: 00:20:38

Your book cover up for those that will be viewing.

Howard Brown: 00:20:42

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

Howard Brown: 00:20:47

Yeah.

Jenny Jones: 00:20:47

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

Jenny Jones: 00:20:50

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

Jenny Jones: 00:20:56

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

Jenny Jones: 00:21:01

for me.

Howard Brown: 00:21:03

And those are genetic mutations. Love it.

Jenny Jones: 00:21:05

Yeah. They're the mutant.

Howard Brown: 00:21:07

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

Howard Brown: 00:21:10

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

Howard Brown: 00:21:13

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

Howard Brown: 00:21:15

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

Howard Brown: 00:21:19

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

Howard Brown: 00:21:23

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

Howard Brown: 00:21:26

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

Jenny Jones: 00:21:29

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

Jenny Jones: 00:21:32

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

Jenny Jones: 00:21:35

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

Jenny Jones: 00:21:39

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

Jenny Jones: 00:21:43

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

Jenny Jones: 00:21:46

kind of help especially because they don't always have

Jenny Jones: 00:21:48

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

Jenny Jones: 00:21:53

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

Jenny Jones: 00:21:58

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

Jenny Jones: 00:22:04

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

Jenny Jones: 00:22:08

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

Jenny Jones: 00:22:12

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

Jenny Jones: 00:22:16

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

Jenny Jones: 00:22:21

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

Jenny Jones: 00:22:25

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

Jenny Jones: 00:22:28

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

Jenny Jones: 00:22:32

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

Jenny Jones: 00:22:36

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

Jenny Jones: 00:22:40

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

Jenny Jones: 00:22:43

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

Jenny Jones: 00:22:46

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

Jenny Jones: 00:22:49

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

Howard Brown: 00:22:52

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

Howard Brown: 00:22:56

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

Howard Brown: 00:23:00

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

Howard Brown: 00:23:05

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

Howard Brown: 00:23:10

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

Howard Brown: 00:23:15

cancer screening and getting your meat you know, genetics

Howard Brown: 00:23:19

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

Howard Brown: 00:23:24

missed that some of those opportunities for women to get

Howard Brown: 00:23:28

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

Howard Brown: 00:23:33

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

Howard Brown: 00:23:38

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

Howard Brown: 00:23:43

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

Howard Brown: 00:23:48

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

Howard Brown: 00:23:52

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

Howard Brown: 00:23:57

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

Howard Brown: 00:24:02

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

Howard Brown: 00:24:07

had either an early stage one diagnosis or no colon cancer

Howard Brown: 00:24:12

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

Howard Brown: 00:24:16

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

Howard Brown: 00:24:21

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

Howard Brown: 00:24:26

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

Howard Brown: 00:24:31

are positive surgeries, hemicolectomy chemo therapies,

Howard Brown: 00:24:35

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

Jenny Jones: 00:24:36

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

Jenny Jones: 00:24:39

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

Jenny Jones: 00:24:40

leading to my craziness where I had the hot chemo batha

Jenny Jones: 00:24:43

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

Jenny Jones: 00:24:44

cytoreduction Hypex surgery so screening is so important. I

Jenny Jones: 00:24:47

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

Jenny Jones: 00:24:49

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

Jenny Jones: 00:24:51

because my publisher starting to turn cancerous and the primary

Jenny Jones: 00:24:54

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

Jenny Jones: 00:24:55

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

Jenny Jones: 00:24:58

it's terrible.

Jenny Jones: 00:24:59

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

Jenny Jones: 00:25:03

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

Jenny Jones: 00:25:07

FAAP surveillance is to do a colonoscopy starting that 10

Jenny Jones: 00:25:11

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

Jenny Jones: 00:25:15

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

Jenny Jones: 00:25:19

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

Jenny Jones: 00:25:23

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

Jenny Jones: 00:25:27

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

Jenny Jones: 00:25:31

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

Jenny Jones: 00:25:35

important and getting diagnosed correctly. It's really really

Jenny Jones: 00:25:39

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

Jenny Jones: 00:25:43

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

Howard Brown: 00:25:46

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

Howard Brown: 00:25:48

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

Howard Brown: 00:25:51

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

Howard Brown: 00:25:55

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

Howard Brown: 00:25:58

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

Howard Brown: 00:26:00

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

Howard Brown: 00:26:04

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

Howard Brown: 00:26:07

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

Howard Brown: 00:26:10

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

Howard Brown: 00:26:14

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

Howard Brown: 00:26:16

inspiration for us?

Jenny Jones: 00:26:17

Okay, well, so I have my website is life

Jenny Jones: 00:26:20

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

Jenny Jones: 00:26:23

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

Jenny Jones: 00:26:27

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

Jenny Jones: 00:26:31

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

Jenny Jones: 00:26:35

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

Jenny Jones: 00:26:39

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

Jenny Jones: 00:26:43

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

Jenny Jones: 00:26:46

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

Jenny Jones: 00:26:50

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

Jenny Jones: 00:26:54

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

Jenny Jones: 00:26:58

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

Jenny Jones: 00:27:02

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

Jenny Jones: 00:27:06

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

Jenny Jones: 00:27:10

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

Jenny Jones: 00:27:14

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

Jenny Jones: 00:27:18

like, we don't want to be alone.

Howard Brown: 00:27:21

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

Howard Brown: 00:27:24

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

Howard Brown: 00:27:28

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

Howard Brown: 00:27:32

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

Howard Brown: 00:27:36

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

Howard Brown: 00:27:39

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

Howard Brown: 00:27:43

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

Howard Brown: 00:27:47

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

Howard Brown: 00:27:51

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

Howard Brown: 00:27:55

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

Howard Brown: 00:27:58

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

Howard Brown: 00:28:02

discussion guides to download as well. And obviously my book

Howard Brown: 00:28:06

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

Howard Brown: 00:28:10

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

Howard Brown: 00:28:14

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

Howard Brown: 00:28:18

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

Howard Brown: 00:28:22

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

Jenny Jones: 00:28:25

Thank you