Bringing HS (Hidradenitis Suppurativa) Out Of The Dark | Jackson Gillies | TEDxSantaBarbara

I learned how to play guitar three years

I learned how to play guitar three years ago when I was stuck in bed for six

ago when I was stuck in bed for six

ago when I was stuck in bed for six weeks in too much pain to move that’s

weeks in too much pain to move that’s

weeks in too much pain to move that’s when I met Bob but before I can

when I met Bob but before I can

when I met Bob but before I can introduce you to Bob I need to fill you

introduce you to Bob I need to fill you

introduce you to Bob I need to fill you in on how he was introduced to me I was

in on how he was introduced to me I was

in on how he was introduced to me I was born on July 17th 1999 on Long Island

born on July 17th 1999 on Long Island

born on July 17th 1999 on Long Island New York from what I’ve been told that

New York from what I’ve been told that

New York from what I’ve been told that was a pretty cute peaceful baby until I

was a pretty cute peaceful baby until I

was a pretty cute peaceful baby until I got colic and would scream for hours on

got colic and would scream for hours on

got colic and would scream for hours on end one night in an attempt to keep

end one night in an attempt to keep

end one night in an attempt to keep tristate area– asleep my mother put on

tristate area– asleep my mother put on

tristate area– asleep my mother put on the TV and came across Luciano Pavarotti

the TV and came across Luciano Pavarotti

the TV and came across Luciano Pavarotti singing opera and immediately I stopped

singing opera and immediately I stopped

singing opera and immediately I stopped crying as a control variable sheep

crying as a control variable sheep

crying as a control variable sheep switched Sidda news and lo and behold I

switched Sidda news and lo and behold I

switched Sidda news and lo and behold I was crying again so for as long as I can

was crying again so for as long as I can

was crying again so for as long as I can remember music has really been a

remember music has really been a

remember music has really been a soothing force in my life my life moved

soothing force in my life my life moved

soothing force in my life my life moved along pretty smoothly after that up

along pretty smoothly after that up

along pretty smoothly after that up until two days after getting the measles

until two days after getting the measles

until two days after getting the measles mumps rubella vaccine or MMR for short I

mumps rubella vaccine or MMR for short I

mumps rubella vaccine or MMR for short I started walking on my toes flapping my

started walking on my toes flapping my

started walking on my toes flapping my hands and banging my head on things all

hands and banging my head on things all

hands and banging my head on things all babbling and speech came to a screeching

babbling and speech came to a screeching

babbling and speech came to a screeching halt

halt

halt but with my family’s help and early

but with my family’s help and early

but with my family’s help and early intervention home services three days a

intervention home services three days a

intervention home services three days a week for 18 months I graduated just in

week for 18 months I graduated just in

week for 18 months I graduated just in time to get the chickenpox vaccine and

time to get the chickenpox vaccine and

time to get the chickenpox vaccine and another reaction not too long after that

another reaction not too long after that

another reaction not too long after that reaction I was diagnosed with insulin

reaction I was diagnosed with insulin

reaction I was diagnosed with insulin dependent type 1 diabetes but from what

dependent type 1 diabetes but from what

dependent type 1 diabetes but from what I’ve been told I took it like a trooper

I’ve been told I took it like a trooper

I’ve been told I took it like a trooper after getting my first shot in the

after getting my first shot in the

after getting my first shot in the hospital I looked at my nurse and said

hospital I looked at my nurse and said

hospital I looked at my nurse and said thank you

thank you

thank you now throughout my life there seems to be

now throughout my life there seems to be

now throughout my life there seems to be this wonderful endless supply of dark

this wonderful endless supply of dark

this wonderful endless supply of dark ironic humor cast upon me by who knows I

ironic humor cast upon me by who knows I

ironic humor cast upon me by who knows I got out of the hospital aged 3 with type

got out of the hospital aged 3 with type

got out of the hospital aged 3 with type 1 diabetes

1 diabetes

1 diabetes the day before Halloween so instead of

the day before Halloween so instead of

the day before Halloween so instead of candy my treats were alcohol preparation

candy my treats were alcohol preparation

candy my treats were alcohol preparation swabs and insulin and syringes just

swabs and insulin and syringes just

swabs and insulin and syringes just everything a three-year-old could

everything a three-year-old could

everything a three-year-old could possibly dream of right but my mom

possibly dream of right but my mom

possibly dream of right but my mom wanted to inspire me to believe that I

wanted to inspire me to believe that I

wanted to inspire me to believe that I could do anything so we used to cut out

could do anything so we used to cut out

could do anything so we used to cut out little pictures of famous people with

little pictures of famous people with

little pictures of famous people with type 1 diabetes from the New York Times

type 1 diabetes from the New York Times

type 1 diabetes from the New York Times you know uh

you know uh

you know uh Mike Piazza the Mets Patrick Ewing of

Mike Piazza the Mets Patrick Ewing of

Mike Piazza the Mets Patrick Ewing of the Knicks spider-man but shockingly and

the Knicks spider-man but shockingly and

the Knicks spider-man but shockingly and I just learned this recently spider-man

I just learned this recently spider-man

I just learned this recently spider-man Mike Piazza and Patrick Ewing don’t

Mike Piazza and Patrick Ewing don’t

Mike Piazza and Patrick Ewing don’t actually have type 1 diabetes but the

actually have type 1 diabetes but the

actually have type 1 diabetes but the trick worked I grew up playing every

trick worked I grew up playing every

trick worked I grew up playing every sport I could get my hands on and I was

sport I could get my hands on and I was

sport I could get my hands on and I was the lead and every plan musical that I

the lead and every plan musical that I

the lead and every plan musical that I tried out for I was kind of fearless I

tried out for I was kind of fearless I

tried out for I was kind of fearless I also began volunteering for the Juvenile

also began volunteering for the Juvenile

also began volunteering for the Juvenile Diabetes Research Foundation or JDRF for

Diabetes Research Foundation or JDRF for

Diabetes Research Foundation or JDRF for short I appeared in print and TV public

short I appeared in print and TV public

short I appeared in print and TV public service announcements I was also lucky

service announcements I was also lucky

service announcements I was also lucky enough to appear on TV with actress and

enough to appear on TV with actress and

enough to appear on TV with actress and spokesperson Mary Tyler Moore so time

spokesperson Mary Tyler Moore so time

spokesperson Mary Tyler Moore so time marched on as it does and soon enough I

marched on as it does and soon enough I

marched on as it does and soon enough I was in ninth grade that’s when something

was in ninth grade that’s when something

was in ninth grade that’s when something different came along that’s when I met

different came along that’s when I met

different came along that’s when I met Bob meet Bob

Bob meet Bob

Bob meet Bob Bob’s uh I was pretty big a so let’s

Bob’s uh I was pretty big a so let’s

Bob’s uh I was pretty big a so let’s take a moment to put this all together

take a moment to put this all together

take a moment to put this all together Kollek MMR vaccine reaction chickenpox

Kollek MMR vaccine reaction chickenpox

Kollek MMR vaccine reaction chickenpox vaccine reaction type 1 diabetes and now

vaccine reaction type 1 diabetes and now

vaccine reaction type 1 diabetes and now Bob what is it add up to

Bob what is it add up to

Bob what is it add up to well my endocrinologist didn’t know my

well my endocrinologist didn’t know my

well my endocrinologist didn’t know my primary doctor didn’t know my

primary doctor didn’t know my

primary doctor didn’t know my dermatologist didn’t know and with every

dermatologist didn’t know and with every

dermatologist didn’t know and with every appointment Bob kept on getting bigger

appointment Bob kept on getting bigger

appointment Bob kept on getting bigger until finally a plastic surgeon decided

until finally a plastic surgeon decided

until finally a plastic surgeon decided Bob had to go so the pathology report

Bob had to go so the pathology report

Bob had to go so the pathology report came back no MRSA no bacteria no

came back no MRSA no bacteria no

came back no MRSA no bacteria no extraterrestrial matter just big old Bob

extraterrestrial matter just big old Bob

extraterrestrial matter just big old Bob so we moved on in fact we moved all the

so we moved on in fact we moved all the

so we moved on in fact we moved all the way to Florida in hopes that around

way to Florida in hopes that around

way to Florida in hopes that around golfing and surfing in sports

golfing and surfing in sports

golfing and surfing in sports would better regulate my blood Sugar’s

would better regulate my blood Sugar’s

would better regulate my blood Sugar’s there was a theory that Bob might have

there was a theory that Bob might have

there was a theory that Bob might have been caused by unstable blood sugars and

been caused by unstable blood sugars and

been caused by unstable blood sugars and the rent was half of that in New York

the rent was half of that in New York

the rent was half of that in New York what could go wrong here’s what Bob’s

what could go wrong here’s what Bob’s

what could go wrong here’s what Bob’s cousin’s moved in another surgery on my

cousin’s moved in another surgery on my

cousin’s moved in another surgery on my face and one to remove a pilonidal cyst

face and one to remove a pilonidal cyst

face and one to remove a pilonidal cyst on my tailbone and then Bob’s cousins

on my tailbone and then Bob’s cousins

on my tailbone and then Bob’s cousins hit hard my thighs and my inner groin

hit hard my thighs and my inner groin

hit hard my thighs and my inner groin the pain was excruciating and I was

the pain was excruciating and I was

the pain was excruciating and I was embarrassed to talk about it as anyone

embarrassed to talk about it as anyone

embarrassed to talk about it as anyone would beat when they’ve got marbles of

would beat when they’ve got marbles of

would beat when they’ve got marbles of hellfire in their groin when my parents

hellfire in their groin when my parents

hellfire in their groin when my parents would ask me why I was walking funny I

would ask me why I was walking funny I

would ask me why I was walking funny I would just say I took a spill surfing or

would just say I took a spill surfing or

would just say I took a spill surfing or I hurt my back until finally I told my

I hurt my back until finally I told my

I hurt my back until finally I told my mom just for a moment tried to imagine

mom just for a moment tried to imagine

mom just for a moment tried to imagine yourself in my shoes when this all

yourself in my shoes when this all

yourself in my shoes when this all started three years ago in hot muggy

started three years ago in hot muggy

started three years ago in hot muggy Florida I would go through an industrial

Florida I would go through an industrial

Florida I would go through an industrial box of band-aids every week desperately

box of band-aids every week desperately

box of band-aids every week desperately trying to cover up the raw skin on my

trying to cover up the raw skin on my

trying to cover up the raw skin on my thighs with every step the band-aid

thighs with every step the band-aid

thighs with every step the band-aid would chafe against it and cause

would chafe against it and cause

would chafe against it and cause excruciating pain on top of that the

excruciating pain on top of that the

excruciating pain on top of that the physical strain that comes from being in

physical strain that comes from being in

physical strain that comes from being in constant pain was making me exhausted I

constant pain was making me exhausted I

constant pain was making me exhausted I would sleep for 12 to 14 to 16 hours at

would sleep for 12 to 14 to 16 hours at

would sleep for 12 to 14 to 16 hours at a time once I finally could fall asleep

a time once I finally could fall asleep

a time once I finally could fall asleep so after three more dermatologists an

so after three more dermatologists an

so after three more dermatologists an infectious disease specialist and

infectious disease specialist and

infectious disease specialist and another primary doctor the big day

another primary doctor the big day

another primary doctor the big day finally came a new dermatologist shared

finally came a new dermatologist shared

finally came a new dermatologist shared the diagnosis Bob and all his cousins

the diagnosis Bob and all his cousins

the diagnosis Bob and all his cousins were hidradenitis suppurativa that’s why

were hidradenitis suppurativa that’s why

were hidradenitis suppurativa that’s why I’m here today I’m here to bring HS out

I’m here today I’m here to bring HS out

I’m here today I’m here to bring HS out of the shadows so what the heck is HS

of the shadows so what the heck is HS

of the shadows so what the heck is HS well hidradenitis suppurativa is very

well hidradenitis suppurativa is very

well hidradenitis suppurativa is very painful chronic inflammatory skin

painful chronic inflammatory skin

painful chronic inflammatory skin disease that’s defined by recurrent

disease that’s defined by recurrent

disease that’s defined by recurrent nodules tunnels and scarring it can form

nodules tunnels and scarring it can form

nodules tunnels and scarring it can form abscesses from the size of peas to

abscesses from the size of peas to

abscesses from the size of peas to baseballs

baseballs

baseballs anywhere where skin meets skin and other

anywhere where skin meets skin and other

anywhere where skin meets skin and other areas too it is not at all

areas too it is not at all

areas too it is not at all contagious bob was my very first HS

contagious bob was my very first HS

contagious bob was my very first HS flair right there on the top of my head

flair right there on the top of my head

flair right there on the top of my head so how deep are the shadows where HS has

so how deep are the shadows where HS has

so how deep are the shadows where HS has been hiding well I was diagnosed after

been hiding well I was diagnosed after

been hiding well I was diagnosed after just one year for unluckier folks this

just one year for unluckier folks this

just one year for unluckier folks this time in the dark can go on for years

time in the dark can go on for years

time in the dark can go on for years years of teeth gritting grinding

years of teeth gritting grinding

years of teeth gritting grinding agonizing pain every day and night

agonizing pain every day and night

agonizing pain every day and night another cruel twist of HS is that it

another cruel twist of HS is that it

another cruel twist of HS is that it often begins to show symptoms during

often begins to show symptoms during

often begins to show symptoms during puberty so teens hit with HS think it’s

puberty so teens hit with HS think it’s

puberty so teens hit with HS think it’s a sexually transmitted disease and never

a sexually transmitted disease and never

a sexually transmitted disease and never tell another soul suffering in silence

tell another soul suffering in silence

tell another soul suffering in silence the average time it takes from most

the average time it takes from most

the average time it takes from most folks to get a proper diagnosis is over

folks to get a proper diagnosis is over

folks to get a proper diagnosis is over seven years why so long well in some

seven years why so long well in some

seven years why so long well in some cases doctors simply aren’t familiar

cases doctors simply aren’t familiar

cases doctors simply aren’t familiar with it they don’t connect the dots they

with it they don’t connect the dots they

with it they don’t connect the dots they see an abscess here there as an isolated

see an abscess here there as an isolated

see an abscess here there as an isolated event and in other cases people are of

event and in other cases people are of

event and in other cases people are of course reluctant to seek help unlike the

course reluctant to seek help unlike the

course reluctant to seek help unlike the ads I did with JDRF and Mary Tyler Moore

ads I did with JDRF and Mary Tyler Moore

ads I did with JDRF and Mary Tyler Moore this disease is not at all advertised or

this disease is not at all advertised or

this disease is not at all advertised or talked about one surgeon told my family

talked about one surgeon told my family

talked about one surgeon told my family you know there’s not a lot of research

you know there’s not a lot of research

you know there’s not a lot of research into it because it’s not a sexy disease

into it because it’s not a sexy disease

into it because it’s not a sexy disease the only person of note that I’ve come

the only person of note that I’ve come

the only person of note that I’ve come across to be even associated with the

across to be even associated with the

across to be even associated with the disease is Karl Marx he said the painful

disease is Karl Marx he said the painful

disease is Karl Marx he said the painful boils affected his writings and who

boils affected his writings and who

boils affected his writings and who could blame him in a world that is so

could blame him in a world that is so

could blame him in a world that is so obsessed with outer beauty who really

obsessed with outer beauty who really

obsessed with outer beauty who really wants to talk about painful abscesses

wants to talk about painful abscesses

wants to talk about painful abscesses and they’re growing in their underarm

and they’re growing in their underarm

and they’re growing in their underarm well I will people often say that H s is

well I will people often say that H s is

well I will people often say that H s is a rare condition but it’s not rare it

a rare condition but it’s not rare it

a rare condition but it’s not rare it afflicts over 4% of the population and

afflicts over 4% of the population and

afflicts over 4% of the population and it’s three times more common in women

it’s three times more common in women

it’s three times more common in women than men since there are seven billion

than men since there are seven billion

than men since there are seven billion people on the planet that means as many

people on the planet that means as many

people on the planet that means as many as 230 million people world

as 230 million people world

as 230 million people world why’d have HS yet it’s rarely discussed

why’d have HS yet it’s rarely discussed

why’d have HS yet it’s rarely discussed or especially studied quoting a 2013 NIH

or especially studied quoting a 2013 NIH

or especially studied quoting a 2013 NIH report even though the first reports of

report even though the first reports of

report even though the first reports of the disease go back to the 19th century

the disease go back to the 19th century

the disease go back to the 19th century both patients and physicians are plagued

both patients and physicians are plagued

both patients and physicians are plagued for an answer

for an answer

for an answer desperate for a definitive treatment not

desperate for a definitive treatment not

desperate for a definitive treatment not only do I want to bring HS out of the

only do I want to bring HS out of the

only do I want to bring HS out of the shadows but I also want to help people

shadows but I also want to help people

shadows but I also want to help people avoid some of the wrong paths that I’ve

avoid some of the wrong paths that I’ve

avoid some of the wrong paths that I’ve been down my path is a well-traveled one

been down my path is a well-traveled one

been down my path is a well-traveled one I’ve seen 14 doctors many of whom

I’ve seen 14 doctors many of whom

I’ve seen 14 doctors many of whom prescribe oral antibiotics or steroids

prescribe oral antibiotics or steroids

prescribe oral antibiotics or steroids which often lead to more flares and can

which often lead to more flares and can

which often lead to more flares and can cause very nasty side effects surgery is

cause very nasty side effects surgery is

cause very nasty side effects surgery is often the recommended course I’ve had

often the recommended course I’ve had

often the recommended course I’ve had five surgeries in the past two years but

five surgeries in the past two years but

five surgeries in the past two years but surgery can leave wounds that are slow

surgery can leave wounds that are slow

surgery can leave wounds that are slow to heal or literally never heal at all

to heal or literally never heal at all

to heal or literally never heal at all so you might be thinking what causes HS

so you might be thinking what causes HS

so you might be thinking what causes HS well no one knows for sure but some of

well no one knows for sure but some of

well no one knows for sure but some of the possible causes include heredity

the possible causes include heredity

the possible causes include heredity genetics hormones environmental toxins

genetics hormones environmental toxins

genetics hormones environmental toxins imbalances in the microbiome and

imbalances in the microbiome and

imbalances in the microbiome and intestinal permeability or a leaky gut

intestinal permeability or a leaky gut

intestinal permeability or a leaky gut as for cures none yet but there are

as for cures none yet but there are

as for cures none yet but there are theories about everything from

theories about everything from

theories about everything from antibiotics to immunosuppressants to

antibiotics to immunosuppressants to

antibiotics to immunosuppressants to biologics with very scary long lists of

biologics with very scary long lists of

biologics with very scary long lists of side effects and hf suffers along with

side effects and hf suffers along with

side effects and hf suffers along with myself have tried everything and I mean

myself have tried everything and I mean

myself have tried everything and I mean everything

everything

everything acupuncture hyperbaric oxygen treatments

acupuncture hyperbaric oxygen treatments

acupuncture hyperbaric oxygen treatments lymphatic therapy colonics massage the

lymphatic therapy colonics massage the

lymphatic therapy colonics massage the emu oil but for me and a lot of other

emu oil but for me and a lot of other

emu oil but for me and a lot of other sufferers painful flares have been

sufferers painful flares have been

sufferers painful flares have been minimized and for some full remission

minimized and for some full remission

minimized and for some full remission achieved through dietary changes in the

achieved through dietary changes in the

achieved through dietary changes in the two years since changing my diet I

two years since changing my diet I

two years since changing my diet I haven’t had a single flare large enough

haven’t had a single flare large enough

haven’t had a single flare large enough to warrant a surgery now some sufferers

to warrant a surgery now some sufferers

to warrant a surgery now some sufferers exploring diet as a possible solution

exploring diet as a possible solution

exploring diet as a possible solution followed the autoimmune protocol or the

followed the autoimmune protocol or the

followed the autoimmune protocol or the AIP diet they cut out any grain any nuts

AIP diet they cut out any grain any nuts

AIP diet they cut out any grain any nuts seeds legumes

seeds legumes

seeds legumes eggs nightshade vegetables the list

eggs nightshade vegetables the list

eggs nightshade vegetables the list isn’t very long of what we can eat and

isn’t very long of what we can eat and

isn’t very long of what we can eat and the other option is to do modified

the other option is to do modified

the other option is to do modified versions of a paleo diet yeast can be a

versions of a paleo diet yeast can be a

versions of a paleo diet yeast can be a very very big culprit a 2014 National

very very big culprit a 2014 National

very very big culprit a 2014 National Institutes of Health report said that

Institutes of Health report said that

Institutes of Health report said that all patients put on to a yeast-free diet

all patients put on to a yeast-free diet

all patients put on to a yeast-free diet showed immediate stabilization of their

showed immediate stabilization of their

showed immediate stabilization of their symptoms and the skin lesions regressed

symptoms and the skin lesions regressed

symptoms and the skin lesions regressed over a 12-month period when yeast was

over a 12-month period when yeast was

over a 12-month period when yeast was reintroduced in beer or bread patients

reintroduced in beer or bread patients

reintroduced in beer or bread patients showed an immediate demonstration of

showed an immediate demonstration of

showed an immediate demonstration of skin lesions many of us searching for

skin lesions many of us searching for

skin lesions many of us searching for answers found them in a book called the

answers found them in a book called the

answers found them in a book called the hidden plague by Tara grant another 2014

hidden plague by Tara grant another 2014

hidden plague by Tara grant another 2014 National Institutes of Health report

National Institutes of Health report

National Institutes of Health report said that Tara’s book has led many

said that Tara’s book has led many

said that Tara’s book has led many patients and researchers to look at the

patients and researchers to look at the

patients and researchers to look at the role of diet as a possible trigger

role of diet as a possible trigger

role of diet as a possible trigger Tara’s book was a huge lift for me and I

Tara’s book was a huge lift for me and I

Tara’s book was a huge lift for me and I know for a lot of other people she

know for a lot of other people she

know for a lot of other people she travelled the exact same circuit that I

travelled the exact same circuit that I

travelled the exact same circuit that I did from Doctor to doctor with empathy

did from Doctor to doctor with empathy

did from Doctor to doctor with empathy and answers in very short supply there

and answers in very short supply there

and answers in very short supply there are also thousands of posts on a

are also thousands of posts on a

are also thousands of posts on a Facebook page called the HS diet

Facebook page called the HS diet

Facebook page called the HS diet connection all about food it can be

connection all about food it can be

connection all about food it can be incredibly uplifting to see when people

incredibly uplifting to see when people

incredibly uplifting to see when people have small successes like reintroducing

have small successes like reintroducing

have small successes like reintroducing a food that they haven’t had in a very

a food that they haven’t had in a very

a food that they haven’t had in a very long time or big ones like going into

long time or big ones like going into

long time or big ones like going into remission but at the same time it can be

remission but at the same time it can be

remission but at the same time it can be heartbreaking when people sneak just a

heartbreaking when people sneak just a

heartbreaking when people sneak just a little bite of birthday cake or they

little bite of birthday cake or they

little bite of birthday cake or they have a slice of pizza and they suffer

have a slice of pizza and they suffer

have a slice of pizza and they suffer with an abscess that can take months or

with an abscess that can take months or

with an abscess that can take months or years to heal I sort of slipped off the

years to heal I sort of slipped off the

years to heal I sort of slipped off the wagon sometime two years ago and thought

wagon sometime two years ago and thought

wagon sometime two years ago and thought I could eat some breakfast burritos from

I could eat some breakfast burritos from

I could eat some breakfast burritos from school I paid with two baseball-sized

school I paid with two baseball-sized

school I paid with two baseball-sized abscesses under each arms and they

abscesses under each arms and they

abscesses under each arms and they really recently just started to heal I

really recently just started to heal I

really recently just started to heal I have to say thank you to the saintly

have to say thank you to the saintly

have to say thank you to the saintly souls of the HS diet connection page

souls of the HS diet connection page

souls of the HS diet connection page they aren’t selling anything and they

they aren’t selling anything and they

they aren’t selling anything and they have nothing to gain but they spend day

have nothing to gain but they spend day

have nothing to gain but they spend day and night helping folks like me who have

and night helping folks like me who have

and night helping folks like me who have been misdiagnosed and misguided

been misdiagnosed and misguided

been misdiagnosed and misguided some people sadly can’t stand the pain

some people sadly can’t stand the pain

some people sadly can’t stand the pain and shame and they resort to suicide HS

and shame and they resort to suicide HS

and shame and they resort to suicide HS can hit anytime from 10 years of age and

can hit anytime from 10 years of age and

can hit anytime from 10 years of age and up and some people suffer their entire

up and some people suffer their entire

up and some people suffer their entire lives some people feel isolated anxious

lives some people feel isolated anxious

lives some people feel isolated anxious depressed unable to engage in any sort

depressed unable to engage in any sort

depressed unable to engage in any sort of sport I able to engage in any sort of

of sport I able to engage in any sort of

of sport I able to engage in any sort of meaningful relationship I haven’t been

meaningful relationship I haven’t been

meaningful relationship I haven’t been swimming or in any open water in two

swimming or in any open water in two

swimming or in any open water in two years in fear of my wounds getting

years in fear of my wounds getting

years in fear of my wounds getting infected there’s another ironic twist

infected there’s another ironic twist

infected there’s another ironic twist moving to sunny South California the

moving to sunny South California the

moving to sunny South California the best surf spot in the world and not

best surf spot in the world and not

best surf spot in the world and not being able to surf anymore it’s time to

being able to surf anymore it’s time to

being able to surf anymore it’s time to turn this thing around if you want to

turn this thing around if you want to

turn this thing around if you want to help bring H s out of the dark share my

help bring H s out of the dark share my

help bring H s out of the dark share my story tell a scientist or researcher

story tell a scientist or researcher

story tell a scientist or researcher maybe some bright student would want to

maybe some bright student would want to

maybe some bright student would want to tackle this condition and if you can’t

tackle this condition and if you can’t

tackle this condition and if you can’t remember the 10 syllable name

remember the 10 syllable name

remember the 10 syllable name hidradenitis suppurativa try to remember

hidradenitis suppurativa try to remember

hidradenitis suppurativa try to remember HS tell people about Bob he was

HS tell people about Bob he was

HS tell people about Bob he was memorable right if you or someone that

memorable right if you or someone that

memorable right if you or someone that you know has the symptoms abscesses in

you know has the symptoms abscesses in

you know has the symptoms abscesses in the groin the underarms the bra line and

the groin the underarms the bra line and

the groin the underarms the bra line and the tailbone tell them that there are

the tailbone tell them that there are

the tailbone tell them that there are online blogs and Facebook pages where

online blogs and Facebook pages where

online blogs and Facebook pages where people with HS help each other day and

people with HS help each other day and

people with HS help each other day and night tell them that they aren’t alone

night tell them that they aren’t alone

night tell them that they aren’t alone remember that statistic up to 4% of the

remember that statistic up to 4% of the

remember that statistic up to 4% of the population has HS if there are 300 of

population has HS if there are 300 of

population has HS if there are 300 of you with me today that means as many as

you with me today that means as many as

you with me today that means as many as a dozen of you may be suffering along

a dozen of you may be suffering along

a dozen of you may be suffering along with me I also invite anyone with HS to

with me I also invite anyone with HS to

with me I also invite anyone with HS to share their story let’s start a

share their story let’s start a

share their story let’s start a conversation one day I was at the

conversation one day I was at the

conversation one day I was at the grocery store and this little girl came

grocery store and this little girl came

grocery store and this little girl came up to me and asked what was wrong with

up to me and asked what was wrong with

up to me and asked what was wrong with my neck I could see her mother behind

my neck I could see her mother behind

my neck I could see her mother behind her eyes widening starting to panic

her eyes widening starting to panic

her eyes widening starting to panic right but I thanked the little girl and

right but I thanked the little girl and

right but I thanked the little girl and I told her a mini version of HS the way

I told her a mini version of HS the way

I told her a mini version of HS the way to get this thing out of the dark

to get this thing out of the dark

to get this thing out of the dark is to talk about it I remember the first

is to talk about it I remember the first

is to talk about it I remember the first time that I met Mary Tyler Moore we did

time that I met Mary Tyler Moore we did

time that I met Mary Tyler Moore we did a public service announcement together

a public service announcement together

a public service announcement together called what does hope look like it was a

called what does hope look like it was a

called what does hope look like it was a powerful message that I’ll never forget

powerful message that I’ll never forget

powerful message that I’ll never forget from an unforgettable person Mary spent

from an unforgettable person Mary spent

from an unforgettable person Mary spent decades of her life fighting for her

decades of her life fighting for her

decades of her life fighting for her cause and she never gave up hope

cause and she never gave up hope

cause and she never gave up hope as for HS what does hope look like it

as for HS what does hope look like it

as for HS what does hope look like it looks like me and the millions of other

looks like me and the millions of other

looks like me and the millions of other people in hiding it all started with Bob

people in hiding it all started with Bob

people in hiding it all started with Bob let’s end with him – may he serve as a

let’s end with him – may he serve as a

let’s end with him – may he serve as a reminder to you all thank you

reminder to you all thank you

reminder to you all thank you [Applause]