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]
”
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