Life with...Arthritis
Summary
TLDRThis video script tells the stories of individuals living with arthritis in Ireland, highlighting the challenges faced by both children and adults. It features personal accounts of pain, mobility issues, and the impact on daily life. The narrative also explores the journey of diagnosis, treatment options including biologic drugs, and the emotional toll of living with a chronic condition. Despite the hardships, it emphasizes the resilience and hope of those affected, showcasing how they strive to maintain a normal life and the importance of health education and support.
Takeaways
- 🦴 Arthritis is a joint disease that causes swelling and pain, with no current cure and various causes.
- 👶 Over 700,000 people in Ireland live with arthritis, including 1,000 children affected by juvenile forms of the disease.
- 😓 Juvenile rheumatoid arthritis can cause extreme chronic joint pain, impacting the daily lives of children like Neeve Costello.
- 💉 Treatments like steroid injections can bring temporary relief, but arthritis often returns after periods of remission.
- 🏋️♀️ Exercise like swimming and physiotherapy are crucial for keeping joints flexible and managing pain.
- 🤕 Arthritis flare-ups cause painful joint inflammation and can occur without warning, impacting mobility and daily activities.
- 👩⚕️ Managing juvenile arthritis involves regular medical interventions, including blood tests and new treatments like biologic injections.
- 💪 Arthritis patients like Laura Hickey and Neeve Costello are determined to live active lives despite their conditions, using pain management techniques.
- 👨👩👧 The support of family members is essential for young arthritis patients, with full-time caregivers playing a key role.
- 🔬 New research and health education are providing hope for arthritis sufferers, offering better treatment options and understanding of the condition.
Q & A
What is arthritis and what are its effects on the human body?
-Arthritis is a disease that affects the joints, causing swelling and pain. It can impact mobility at any age, with osteoarthritis being common in older individuals due to wear and tear of joints, while juvenile arthritis affects children and teenagers, including forms like rheumatoid arthritis.
How many people in Ireland are reported to be living with arthritis?
-Over 700,000 people in Ireland are living with different kinds of arthritis, including approximately 1,000 children.
What is juvenile rheumatoid arthritis and how does it affect children?
-Juvenile rheumatoid arthritis is an unusual and severe form of arthritis in children, characterized by chronic joint pain. It can limit mobility and cause significant discomfort, affecting the child's daily activities and quality of life.
How did Neeve Costello's arthritis first manifest and how was it initially perceived by her parents?
-Neeve's arthritis first manifested with a sense of heat in her joints, swelling, and stiffness. Her parents initially perceived it as growing pains and thought her shoes were too tight, not realizing the severity of her condition until her knee swelled significantly.
What challenges does Laura Hickey face due to her arthritis, and how does she manage them?
-Laura Hickey faces challenges such as pain management, side effects from medication, and maintaining independence. She manages these challenges through various treatments, including biologic injections, physiotherapy, and exercise, as well as by being vocal about her condition and seeking support.
What is the impact of arthritis on a person's independence and daily life?
-Arthritis can significantly impact a person's independence and daily life by causing pain and limiting mobility, making it difficult to perform routine tasks such as dressing, cooking, and personal care. It can also lead to social isolation and emotional distress.
How does Neeve Costello's family support her in managing her arthritis?
-Neeve's family supports her by accompanying her to medical appointments, administering treatments, and providing emotional support. They also work closely with her medical team to explore different treatment options to manage her condition.
What are some of the treatments and therapies mentioned in the script for managing arthritis?
-The script mentions various treatments and therapies for managing arthritis, including steroid injections, biologic drugs, physiotherapy, exercise, and the use of assistive devices like crutches and wrist braces.
How does arthritis affect a person's education and career prospects?
-Arthritis can affect a person's education and career prospects by causing frequent absences from school or work due to flare-ups and by limiting the types of activities or fields of study one can pursue. However, with proper management and support, individuals with arthritis can still achieve academic and career success.
What are the potential complications of arthritis medication on family planning?
-Some arthritis medications, particularly biologics, can complicate family planning as they may need to be discontinued for a certain period before and after pregnancy, which can impact the disease management and the health of both the mother and the baby.
How does the script highlight the importance of health education and research in improving the lives of arthritis sufferers?
-The script emphasizes the importance of health education and research by showcasing how new treatments and a better understanding of the disease can bring hope and improve the quality of life for arthritis sufferers and their families.
Outlines
🤕 Introduction to Arthritis and Its Impact on Irish Lives
Arthritis is a prevalent joint disease causing swelling and pain, with no known cure. It affects over 700,000 people in Ireland, including 1,000 children. The narrative focuses on the challenges faced by arthritis sufferers, including mobility issues and the emotional toll. It introduces the story of two young individuals, Neeve Costello and Laura Hickey, who are living successful lives despite their arthritis. Neeve, at 12 years old, manages her juvenile rheumatoid arthritis, an autoimmune disease that causes chronic joint pain. Her family shares their experiences, including misdiagnoses and the struggle to find effective treatments. The video also touches on the broader implications of arthritis, such as its status as a leading cause of disability in Ireland.
🏥 Healthcare Journeys and Living with Juvenile Arthritis
This section delves into the healthcare experiences of Neeve and Laura, who both suffer from juvenile rheumatoid arthritis. Neeve's parents recount her diagnosis at a young age and the initial misdiagnoses as growing pains. The family's journey includes visits to a specialist center at Cromin Children's Hospital in Dublin, where Neeve receives treatment. Laura shares her own experiences, from her diagnosis at age 10 to managing her condition into adulthood. She discusses the physical challenges, such as morning stiffness and pain, and the emotional impact of living with a chronic illness. The video also highlights the importance of healthcare support and the search for effective treatments, including the use of biologic drugs that have shown promise in managing arthritis symptoms.
💉 The Struggle with Treatment and the Emotional Journey
The third paragraph explores the emotional and physical challenges faced by individuals with arthritis. It details the difficulties in finding effective treatments and the emotional toll of living with a chronic illness. Neeve's mother expresses her feelings of helplessness and the search for answers when her daughter's condition initially worsened. Laura discusses her experiences with various treatments, including the use of steroids and the impact on her education. The video also touches on the importance of cleanliness to prevent infections and the various tools and techniques used to manage flare-ups, such as baths and exercises. The emotional journey includes feelings of isolation and the struggle to maintain independence, as well as the support from family and healthcare professionals.
👨⚕️ Family Dynamics and the Role of Medical Professionals
This section focuses on the family dynamics and the role of medical professionals in managing arthritis. It highlights the importance of regular blood tests in monitoring the disease's progress and the use of various medical tools to alleviate symptoms during flare-ups. The video features Neeve's father discussing his work schedule and his desire to be more involved in her care, as well as the family's reliance on her mother as the primary caregiver. It also includes a visit to a doctor's office, where Neeve's mother explains the importance of understanding medical tests and the impact of arthritis on the family's daily life. The video emphasizes the collaborative effort between patients, families, and healthcare providers in managing the disease.
💊 Balancing Treatment and the Desire for Parenthood
The final paragraph addresses the challenges faced by arthritis patients in managing their treatment and the desire to have children. It discusses the potential complications that medications can have on pregnancy and the need for patients to stop treatment before conception. The video features Laura's personal reflections on her desire to have a child and the implications of her condition on this goal. It also includes insights from Neeve's family as they work closely with doctors to find the best treatment options. The narrative concludes with a focus on the hope for better treatments and the resilience of individuals living with arthritis, despite the challenges they face.
Mindmap
Keywords
💡Arthritis
💡Juvenile Rheumatoid Arthritis
💡Autoimmune Disease
💡Steroids
💡Biologic Drugs
💡Flare-up
💡Physiotherapy
💡Inflammation
💡Disability
💡Remission
Highlights
Arthritis is a disease affecting over 700,000 people in Ireland, including 1,000 children.
There is no cure for arthritis, which can cause severe joint pain and swelling.
Arthritis can lead to disability, affecting mobility at any age.
Juvenile arthritis affects children and teenagers, manifesting in various forms including rheumatoid arthritis.
New research and health education offer hope to arthritis sufferers and their families.
Neeve Costello, a 12-year-old, lives with juvenile rheumatoid arthritis, an extreme form of the disease.
Chronic joint pain is a daily reality for children with juvenile arthritis.
Neeve's family initially faced misdiagnosis, with her symptoms being attributed to growing pains.
Health cutbacks have resulted in longer waiting times for hospital services, impacting arthritis treatment.
Laura Hickey, diagnosed with juvenile rheumatoid arthritis at age 10, describes living with chronic pain.
Arthritis can cause severe morning stiffness and soreness, affecting daily activities.
Swimming is a beneficial activity for Neeve, as it doesn't hurt her knees.
Neeve's treatment journey included steroid injections, which initially provided relief.
Laura struggled with managing her arthritis during her teenage years and found school challenging.
Arthritis flare-ups can be debilitating, causing severe joint pain and inflammation.
Maintaining cleanliness is crucial for arthritis sufferers to avoid infections that can exacerbate symptoms.
Physiotherapy and exercise are essential for keeping arthritic joints flexible and reducing pain.
Arthritis can complicate a woman's plans for pregnancy due to medication side effects.
Biologic drugs have shown promise in treating arthritis by blocking proteins that cause swelling and pain.
For Laura, a weekly injection and periodic joint injections have significantly improved her condition.
Transcripts
arthritis is a disease of the joints it
causes swelling and pain arthritis has
many causes and to date no cure over
700,000 people are living with different
kinds of arthritis in Ireland 1,000 of
those are
children it was very sore and I just
knew I had to get on with it I knew the
pain would go away some
stage if I let it win I hard this will
win but it can be beat like
you can live a fallen Act of
Life arthritis is the biggest cause of
disability in Ireland joint pain and
swelling causes Mobility problems at any
age
in older people osteoarthritis is the
wear and tear of joints juvenile
arthritis affects children and teenagers
and can appear in different forms
including rheumatoid
arthritis however new research and
health education increasingly brings
fresh hope to arthritis sufferers and
families this is the story of two young
people who are making a success of life
with arthritis
the Costo family live in bansa tieri NE
Costo is
12 I'm leave this is my mom Wendy my
sister qua and my dad Dean is at
work okay so this is me and my granny
when I was small and I love my granny
she's really close to me and this
cushion I got that from my best friend
Ruth she's really good to me this is my
guitar and I've been playing it for 2
years and when I started off I didn't
like it and I wanted to quit it but now
I I like it these are all my posters on
my door I have a lot of girls
allowed I have a dog called Holly and I
love playing with her outside and walk
in her Neeve Costello has juvenile
rheumatoid arthritis it's an unusual and
severe form of arthritis and children
chronic joint pain is a part of neeve's
life I do feel as a carer for NE now I'm
a full-time carer that this is a serious
serious autoimmune disease this is
extreme pain for kids NE often says it's
like someone has stuck a knit and needle
into a joint and tweet it around a
little
bit NE is the oldest of Wendy and Dean
Costello's two children we have a great
relationship we can talk about anything
to one another and she's a very honest
and open child oh
I'ma Black Sheep
how childhood arthritis can be difficult
to diagnose symptoms include a sense of
heat in the joints swelling and
stiffness she actually dragged her left
leg slightly behind as she crawled and
relied on her right leg to do all the
work and even then when she walked her
left leg was always skipping uh even my
dad commented one day are her shoes too
tight on her she's kind of walking funny
in her left leg and then even a couple
times we've been to the doctor we said
that left leg is kind of funny you know
we didn't quite know how to explain it
but as I say hindsight's a great thing
uh but he said she was growing it was
growing pains and uh you know there's
nothing to worry about so we didn't we
didn't worry at all till three and a
half and then it was one morning she
woke up with a an enormous knee not just
like a knee that she'd fallen and there
was bruising no it was just like her
knee had completely puffed out and then
the next morning she came in and her
hands and knees into our bedroom and
said Mommy I can't
walk recent Health cutbacks can mean
longer waiting times for some Hospital
Services Neeve attended a specialist
center for juvenile arthritis at cromin
Children's Hospital in
Dublin when we got to cromin we
certainly didn't realize what was ahead
of us
oh 25-year-old Laura hickey lives in
Dublin she shares an apartment with her
boyfriend Mark seriously I'm Laura's
boyfriend of 6 years so we've been
living together for about five sort of
jumped in real quick and uh she's she's
try like she's really brave but she's um
when she's when she gets sore and things
she tries not to let it affect her so
she tries to you know just tries to live
a normal life with it and sometimes it's
a bit hard like particularly if she's
having a flare up in the mornings and
things and maybe it's hard for her to
get going and she kind of has to get
used to so I've gotten used to
it Laura was diagnosed with juvenile
rheumatoid arthritis when she was 10
years old people say you know when
they're diagnosed they're devastated I
wasn't I was so relieved like I was
beyond relieved cuz when I was a kid I
had my whole life like in
pain I suppose arthritis manifested
itself as something else my mom and dad
at night time and in the morning they
rubing you know anti-inflammatory crment
to my joints and stuff and like the
doctors really were like there's kind of
pretty much nothing wrong so I thought
like I was literally going mad but then
I was 10 I woke up and I couldn't move
so my mom thought me straight down to
the GP and it was that GP that pretty
much spotted it straight away and he's
like I think she's juvenile
arthritis Laura hickey's arthritis is an
autoimmune
condition when the condition is active
her body attacks itself at the joints
creating
inflammation the result is painful
swelling in her ankles knees wrists
hands and
feet the exact cause of juvenile
arthritis is
unknown the word arthritis to me means
pain it means that I'm quite sore in the
morning and I get quite stiff throughout
the
day I always thought it was a crap cook
and then I started cooking so I suppose
it's sense of achievement
really so I'm just putting the chocolate
in here cuz I break it up my hands my
hands are quite sore so I'm going to
literally bash the hell out of
it the can's like
um like this guy here my choice of when
I'm buying tins stuff would be get these
cuz the tin openers is a lot more
difficult but sometimes these break
which um can be frustrating when you
can't do something you're stuck at home
and you're trying to bake something or
you're trying to cook your dinner and
nothing kind of seems to be
working so pressing something as simple
as like the button
here need my two
fingers to release it which is I suppose
something everyone else find myself
simple B even lifting
this my lowest point having this will be
when I can't do anything for myself when
I'm literally I get out of the bed and
I'm like a 90-year old woman I actually
think my granny is almost 90 and she
could well out run me at times and
you're literally on crutches and even
then the caches you can barely use them
because you're putting so much pressure
on your body and just literally not
being able to get dressed like do your
hair cook for
yourself it's so awful because you kind
of lose your Independence and you're
young woman and you don't have the
same like life as everyone else and you
kind of wonder
why NE Costello enjoys swimming lessons
at her local
pool I love swimming because it helps my
knees as well and I just love being in
the water and
swimming I can do anything I want in the
water cuz it doesn't hurt me at all
hello n
hello Daddy how are you today I am
well after her early arthritis diagnosis
Neeve continued to feel pain when she
was a
toddler so then we went back to cromin
and we had to have another course of
steroids still things didn't
improve I didn't really know what it was
I just knew I had pains in my knees and
they were very sore it was only my left
knee at that stage but still my knee was
very very sore
So eventually when she was five they
injected her joint then and to be honest
she was like a new woman when she got
that injection and I thought that's it
that's the end of that
now ne's new treatment worked well at
first she was painfree for a number of
years but in 2007 her rest bite ended
suddenly NE said M my KN feels funny and
I said roll up your trousers NE and she
rolled up her trousers and it was
massive so I arranged to go to
Crumblin I thought oh God how could I
stay dorming for 2 years and then all of
a sudden decided to come back she wasn't
under any stress or nothing had changed
in her life that you know might have
brought it on but Dr Ken said yeah
juvenile as gracious
I think the lowest point for me was when
after the 2 years remission it came back
if it come back maybe 6 months after the
initial then maybe I would have dealt
with it better but because we had 2
years I'm not a twinge and Eve getting
back to full health I really felt so
sorry for myself and Eve I just felt
like something cruel had happened to us
and how unlucky we were and why did it
happen to us
M was always crying and I usually tell
her like stop crying like it's going to
go away but it never did
really I was Bish drama queen I was
crying a lot and say why is it me that
get everything and my mom used to try
and calm me down but now I I understand
now that I'm older and I know what it
it's all like but back then I was young
and I didn't know what it was and I just
kept crying and crying and why is it me
why is everything happened to
me at the beginning I blame myself was
there something I did when she was young
was there something down to my parenting
that brought this on well obviously now
I know that is complete load of rubbish
but at that stage you're you are
searching for answers and even little
hints why did they start but as the
years go on you realize no matter what
you'd have done the disease is going to
move as slow or as fast as it sees fit
in Dublin Laura hickey found managing
teenage arthritis
difficult I tried so many tablets and
various treatments and herbal and
medications and stuff and I went from
one basically medication to another as a
kid and nothing worked and I got very
little relief and I was taking steroids
quite a
lot I was Miss a lot of time in
secondary school H just in my fifth and
sixth year but I was still studying at
home and I was complete business head as
all I ever wanted to do and I want to do
finance and stuff my teacher told my mom
that perhaps I should pursue something a
little less challenging so I went and
did it anyway I got my leave insert and
um I went to
college an arthritis flare up is when
symptoms worsen quickly and for no
apparent reason a flare up includes
inflammation and severe crippling joint
pain I actually had a flare a couple of
weeks into my first year in college and
I was really really poorly and I
couldn't move and I had to go find
myself in ugp and go to the doctor and
then get to Dublin to see my consultant
and it was so stressful like to try and
manage everything myself and I suppose
I'm a way stronger person for haven't
had do all those things but I remember
like thinking oh my God how am I going
to do this and
manage this easy and for
just going to give this a push cuz I
don't want to bend down cleanliness is
really important when Low's arthritis is
active attacks can lower her body's
defenses I'm forever washing my hands
cuz when you have an autoimmune disease
you're quite prone to infection
and you got pick up all these little
coals
and kind of flowes and stomach bugs and
stuff so I'm so I suppose paranoids that
I guess and plus they really take it out
of me like I don't don't
um it takes me a while to recover and
then I kind of get a flare from my
joints and stuff
so usually all of a sudden it just pops
up any time any place it it like
mostly I wake up during the night and
like it would wake me during the night
and I couldn't get back to sleep and I'd
have bad nights sleep
I'd wake up in the morning and I'd be
very stiff and i' just run a bath and
have a bath and do some exercises in the
bath to loose my joints out and then I
get up and get dressed and do some more
exercises then when I come home from
school Physiotherapy and exercise keep
arthritic joints
flexible I have a special band that I
push around just to by pull my toes up
and I pulled the band with
them no this this is my file on
arthritis I really need to sort it out
don't I if there's anything in it and in
magazines or anything I Lally just cut
it out because I never know when I'll
need
it actually this is a a particular
brocher that uh quea loves which is
niece younger sister she NE was given
this by the arthritis Association when
she was first diagnosed and and it just
explains particularly for 4 to 8y olds
in real simple terms what happens on
doctor's
visits it shows exactly in lay in terms
what they' be going through and as you
can see qua loves
this qua when I'm having a bad flare up
she' draw a picture for me and and make
me like happy and all and she' um I draw
her cards she dos me cards and
and I play games with
her ne's dad Dean Works long hours as a
sales rep you do miss being at home
there there's certain things that I mean
I'm gone in the morning and so I've I've
never taken leave to a blood T it might
be it might be 11:00 and it might only
be for 10 or 15 minutes but because I
don't work local I can't take that 15
minutes to be there and and and do that
but I generally I take the days we go to
crumlin I take those days off and if she
has to have an injection or whatever I
TR to be there for those as
well um I know she's in good hands when
she's with Wendy anyway and then
sometimes I feel I won't say I feel out
of it I mean but often wondered this you
know I should know a bit more
and regular blood tests monitor the
progress of arthritis charting blood
count can alert to
flareups there are various different
Bloods that uh have to be watched when
you've arthritis like your blood count
in general your ESR which determines the
amount of information going on in your
body so obviously if your ESR is high
which as you can see it was here 20 it
means that the uh arthritis is active
and is bound to pop out in one or two
joints and VAR stages like this number
four it's practically non-existent so
the ESR is the main blood test that
you'll be sent for first to see how
active it is and to determine that it is
arthritis so these are things I have to
use sometimes when um I'm having a flare
up
my cach obviously for obvious reasons um
but I don't have to use that often
anymore thank God and this is what is
known as a wrist
blint and see the bar there keeps your
wrist in a straight position so you
can't move it so it rests your wrist and
when it's inflamed and then this is like
an electric blanket it is fabulous
basically what we're trying to do myself
and my physia who a go to weekly she's
trying to build up the small muscle in
my neck so it takes off the pressure and
what I do was I just literally stick
this behind my neck and lie down and it
the gauge here has see the pressure so
I've to try and keep it at 22 and 24 for
10
seconds Laura hickey was adamant
arthritis would not Define her at
University studying Finance she kept her
illness
hidden so how are you these days good
how are
you I thought I wasn't sick enough for
some reason to join the college
disability that was known as the access
officer Michael
College was someone advisement that I
really should let them know just that I
had something wrong with me so I went
there anyway and I registered her and
she was just so good to me she just told
me like all the services were that were
there I think oh my God it's going to be
such a stigma around me I found that by
telling people that I had arthritis that
they were so understanding so I kind of
true myself and surround myself with
like really nice people and I suppose
that's really how I kind of survived
College
myself and Mark met on the first week of
college and we both graduated at the
same time so it was like it was really
really
nice student life is challenging at the
best of times pain management and side
effects from medication increased those
challenges during a flare up a few years
ago Laura reached a turning
point it was about 2:00 in the morning
and I couldn't move and I pain
everywhere I on my old um tablets I used
to get really bad M ERS and I was just
so sick I just I just thought the night
would have never ever end like Laura
became more vocal about her condition
when I did a course with arthritis
Ireland I realized that there's so much
you could do and that you could just
actually say to your consultant you know
I feel rubbish and this is how it's
impacted my life arthritis sufferers
have several pain relief options not all
successful they come in tablet cream and
injection form under under medical
supervision steroids anti-inflammatory
and newer biologic drugs have proved
beneficial biologics block blood
proteins that lead to swelling and pain
recently Laura hickey found treatment
that works for
her just have my injection here it has
to be a refrigerator at all times which
is a hassle in
itself these injections have literally
transformed my life I just take an
injection once a week and I get my
joints injected just every couple of
months and that is working wonders for
me arthritis medication and Pain
Management can also complicate or hinder
a woman's plans to have
children I suppose I'm 25 now
and my friends laugh me when I think
about having a baby and stuff but when
that choice is taken away from you it's
not it becomes a big deal what we do we
just take these off if I want to become
pregnant I have to come off my
medication for 6 months your body goes
into Mission and then once you have the
baby you get a really bad flare up again
and you go straight back on your
medication then there's the whole impact
of trying to cope with minding the baby
like that's the task in itself for any
woman but when you have arus and you're
having a flare up like it's so
difficult I know because the choice was
taken away me just to the ability to
have a baby straight away that I really
want a child and if I couldn't I'd be so
devastated but I also know that there's
so much more I have to think
about in temporary the costalos work
closely with doctors trying different
medications with daughter Neeve although
they haven't found a perfect solution
biologic injections have helped would
you find the ice helps don't you that
the ice nums the area that was a tip the
nurse gave us when she came out to start
you on the EM now I just need to draw
this out this is the tricky part we're
getting used
to there's a difference when you give
the injection and you see then
afterwards
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