LIVING
WITH
ECZEMA
Our Stories!
1
This scrapbook is dedicated to Scotland’s inspiring children with eczema.
A special thank you to the families who made this exciting project a reality by
taking the time to share their thoughts and hopes.
Intro
This book is the first publication gathering the stories of families of children with severe eczema
in Scotland and also marks the first anniversary of our activities. Selecting its content from all the
fantastic work received from our families was a difficult process, though many stories have indeed
much in common; we hope that our readers will gain a better understanding of life with eczema, while families
joining us realise that they are not alone in their daily battles with the symptoms of eczema.
Amelia Calvert (Chair), Magali Speight (Manager) & Christine Roxburgh (Project Co-ordinator)
About Eczema Outreach Scotland
Set up in 2011, Eczema Outreach (Scotland) is a support charity for people affected by eczema in Scotland.
It specialises in providing support, practical advice and networking opportunities to families of children &
young people suffering from this misunderstood and often distressing condition. Join or contact on:
www.eczemaoutreachscotland.org.uk
Contents
Page
Page
3
16
“It’s itchy and sore but I won’t let it get me down”
Eczema from a child’s perspective
“We feel like we are going round in circles trying to find things that help,
but we are starting to understand the triggers which is a step forward”
A parents’ perspective
Page
Page
22
“It’s such a shame when his skin is so red but I hope it goes away one day”
24
“We can help!”
The impact of eczema on siblings
Dermatologists’ point of view
Page
25
“Eczema Outreach has empowered me to ask for help, and it is so good to
feel we aren’t alone”
How is Eczema Outreach Scotland helping?
Eczema
from a child’s perspective
Eczema can have a big impact on a child’s life: it can affect school,
relationships, activities, diet and self-confidence. Over the next few pages
children tell us what it is like to live with eczema and what they think about it.
ous but
think it’s seri
’t
n
o
d
le
p
o
d
ce. Pe
ave it too ba
st a hindran
ugh to not h
o
n
e
Eczema is ju
y
k
to
c
d
lu
m
sh?”. It use
it can be. I’
hat’s that ra
sometimes
“W
ry
y
sa
d
n
a
I’ve tried eve
still notice
t eczema”.
o
g
e
but people
’v
“I
y
t,
sa
g is the wors
ut now I just
early! Itchin
bother me b
n
…
m
is
re
e
th
ing slimy fro
eatment
don’t like be
o
ls
cream and tr
a
I
.
p
o
st
it is hard to
sometimes
ge 20)
h
g
- Heather (a
s on, eu !
n
o
ti
lo
g
in
tt
pu
- Ciara
(age 8)
I will fight my eczema, it won’t beat me.
- Dominic (age 12)
3
Eczema from a child’s perspective
THE GOOD
- Gemma (age 23)
TOUGH DAYS
sad day
rs old. Sometimes I can be really
think it’s caused
on with my Mum and Dad and I
to day and a bit hyper like I carry
ld be something
I really would wish that there cou
by my sad sore life of eczema.
I always tell
happy in life! On the weekends
that would really help me to stay
out the house
ere fun or shopping so I can stay
my Mum to take me out somewh
ays feel that
s and stomach pain cause I alw
instead of itching, rubbing my eye
t it is!
house but I can’t figure out wha
there’s some kind of allergy in my
Hello! My name is Khadijah I am 13 yea
- Khadijah (age 13)
4
A week with eczema
What is it like to live with eczema day to day? The following excerpts from
children’s journals give us an insight…
COLE’S JOURNAL
Monday
Tuesday
Wednesday
Thursday
COLE (age 12)
Friday
Saturday
Sunday
Tuesday
Niall
(age 7)
Monday
Lewis
“Thurs: My skin is feeling really good today,
I feel good when I look like everyone else.”
Harley
(age 6)
(age 9)
5
A week with eczema
Mya’S JOURNAL
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
by
Mya
(age 5)
Lauren
(age 6)
Friday
“Friday: My arms aren’t as itchy today but my legs are,
Mum keeps on telling me to stop scratching.
6
I can’t help it.”
Dominic
(age 12)
If eczema was a ‘thing’...
Gaelle
(age 7)
It would be a
hedgehog
Isla
(age 8)
Kira
(age 9)
7
If eczema was a ‘thing’...
An evil fairy
sending out
his little
fairies to
tickle me.
- Harley
(age 9)
This is a jaggy
plant as my skin
feels when it’s sore
- Lucy
8
(age 6)
Ciara
(age 8)
If eczema was a ‘thing’...
My skin is like traffic lights
- Lewis
(age 6)
Mya
(age 5)
9
If eczema was a ‘thing’...
Lauren
10
Finlay
(age 6)
(age 6)
If eczema was a ‘thing’...
My eczema would be a stress-ball, happy on
one side, sad on the other and with spiky
bits that make things worse. Soft so I could
squash it when I itched.
Cole
(age 12)
Natalya
(age 8)
I chose a dog because:
If you don’t look after it,
it will go bad. If you feed
and clean it properly, it
can stay nice and clean.
- Rosanne (age 9)
11
If eczema was a ‘thing’...
Monsters this is me
being
attacked by
the monsters.
Emma (age 6)
12
What’s annoying about your eczema?
“That
people
make fun
of it.”
- Niall (age 7)
“Doctors
aren’t too
bothered about
eczema; I keep
hearing “maybe
you’ll grow out
of it”.
“I can’t
concentrate.”
- Heather (age 20)
- Rosanne (age 9)
“I don’t look
good.”
- Gaelle (age 7)
“It
is really
itchy
sometimes.”
- Ciara (age 8)
e
- Finlay (ag
6)
)
6
- Lucy (age
- Isla (age 8)
“It sometimes
makes me fe
el super-hot e
house/school
ven when the
is quite cool.
When I get ex
I just can’t st
cited or tired
op scratching
. I hate it whe
hate the dea
n it bleeds. I
d skin in my b
ed.”
- Emma (age
6)
When my skin is really bad, I don’t want to do anything, not even my judo!! Cuddles from
mum and dad help and mum gives me a back rub too! Soaking in the bath sometimes helps
but it’s hard trying to find something I can use in the bath. The doctor has tried me on loads
of different emollients too! I would really like to soak in a bath with bubbles!
- Dominic
(age 12)
13
Are things different at school because of your eczema?
“Yes because I look not nice.
Everyone’s skin is beautiful
except of mine.
(Hard for mummy to hear)”
- Mya (age 5)
Gaelle (age 7)
“Can’t sit still or concentrate. I
have to go out of the class to get
cream on. When I get super-hot
I cry and the teacher stops the
class. Everyone hates this.”
- Emma (age 6)
“I have lots of friends,
they always help me
when I am itchy they
tell me not to scratch.”
- Kira (age 9)
Lauren (age 6)
- Natalya (age 8)
14
Happy days...
Niall age 7
Cole age 12
“I like this picture of me and my family.
We were on our first holiday and my
eczema went away completely.”
- Harley (age 9)
15
A parent’s perspective
For a parent, the experience of having a child
with eczema can be very difficult. Frustration,
isolation and a feeling of helplessness are all
common experiences. Some parents share
their stories…
“At 19 weeks old our daughter was admitted to
children’s hospital for infected eczema affecting
every part of her body. We spent 4 days in hospital
and on returning home she was free from eczema
for the first time in her life. My 3 year old son took
one look at her and said “she has big eyes”. A few
days later our daughter was covered with eczema
again including her eyelids making her eyes
swollen to the point she could barely open them.
As a mother this broke my heart. I felt useless and
not in control. I wanted to make my daughter well
but had no knowledge or experience of eczema
prior to the birth of my daughter and other than
put my trust in the health service had no idea how
to deal with it or help her.
On returning to children’s hospital the doctor was
baffled and began allergy testing. At this point we
were attending several times per week until at last
she was put on a milk and egg free diet. At this
time we also implemented other measures such
as using surcare soap powder, not allowing her
near anyone wearing perfume, only using cotton
clothing and washing her with emollient. It took
6 long weeks until finally our daughters skin was
improving. It was the first turning point in her
condition.
She is now 2 years old and still suffers from
eczema. We struggle with the itch scratch cycle
every day and night despite daily antihistamine
16
“The ha
rdest t
hing is
watchin
g your
child
scratc
h them
s
e
lves
to shre
ds putt
in
g
sore ho
les in th
eir
perfec
t bodie
s.”
- Ella
medication. We still have a rigorous skin care
regime each and every day which she hates. Every
day is a fight and difficult as a parent knowing the
alternative of what would happen if we did not
use creams. She also has other allergies and is
on a very restricted diet which in itself is difficult
to manage. She still can’t have any milk product
touch her skin or tolerate anyone breathing on her
or kissing her after eating a dairy product such as
ice-cream.
Our daughter is at an age where she wants what
other kids have and doesn’t understand why she
can’t have it. It is hard as a parent knowing what
to do when it comes to birthday parties, toddler
sessions and places where kids are eating things
she can’t have. Nursery is another problem and
I am terrified of putting her somewhere where
myself or a family member are not around to be
vigilant in what she is eating and what is going
near her skin.
I was ignorant to the impact eczema can have on
the sufferer and their families. As a mother of a
child with eczema I cannot describe the anxiety
and stress I have experienced. Normal family
outings like swimming, going to a restaurant or
going on a family holiday need to be managed
carefully to ensure we can reduce the risk of a
reaction or flare up.”
Lydia
A parent’s perspective
“My son and his eczema have brought him and I closer and we have a fab relationship! It is frustrating when he
is itching and I can’t help him but a cuddle helps! I’ve found that having a positive attitude helps and also being
forceful with the school to get them to apply creams etc. Also making people aware of what living with a child
with eczema is like, there are loads of ignorant people out there who think ‘it’s not eczema, there’s no such thing!’
They should try living with a child/person with eczema, it affects the whole family! We all help with the applying
of lotions and potions and also in the encouragement of getting him to apply them. It can be like a cafe in the
house because he often can’t eat what the rest of us are having. Nothing triggers his flare ups and it is trial and
error but hey we cope!”
Katie
“On-going battle
with medication.
Going round in
circles with crea
ms.
ITCHING AHHH!!!”
- Emily
“Now that we are successfully managing our sons eczema I
am finding his food allergies the bigger challenge. I have made
so many egg and dairy free cakes I think I have lost count. I
have been determined that my wee boy would be able to have
a birthday cake he could actually eat. I have included the cake
recipe that I have found the best in the hope I might save others
the time and heartache baking in the kitchen!”
Flora
Dairy & Egg free Chocolate Cake
Ingredients for Cake
1 ½ cups plain flour
1 cup Sugar
1/3 cup cocoa powder
1 tsp bicarbonate of soda
½ tsp salt
1 cup warm water
1/3 cup vegetable oil
1 tsp vanilla essence
1 tsp white wine vinegar
180 degrees Celsius
Muffins – 15/20 minutes
Cake – 40/50 minutes
Use a silicon cake tin or line a cake tin with greaseproof paper as it is difficult to get the cake
out. Mix all the dry ingredients together and the liquid ingredients in a separate bowl. Add the
liquid ingredients into the dry ingredients. Mix as quickly as possible and get it into the oven
as fast as you can. I think the white wine vinegar starts reacting with the rest of the ingredients
to help the cake to rise.
Ingredients for Icing
100g Stork block (Not the stork tub as it contains milk) 300g icing sugar
40g cocoa powder
40 ml oat milk or soya milk
Mix the Stork, icing sugar and cocoa powder together. Slowly add the milk a small bit at a
time. You may find you don’t need to use all of it. Mix with an electric whisk for 5 minutes until
soft and fluffy.
17
Challenges parents have faced / are facing
e
g lik
“We were feelin
“An ongoing ba
no-one else
ttle to get the co
left to
rrect medication
‘get on with it’.
h it.”
was going throug
- Megan
we require. We
are looked upon
I feel we get very
as an ‘atopic’ fa
mily and
little support fro
m professionals.
trigger foods
“Current challenge is managing diet – mainly
ndent.”
home environment as our daughter grows older and more indepe
”
- Abigail
– out with the
- Faith
attitudes of others
“The
staff have been very helpfu
l
and have supported our son
at school. Although
tremendously!”
- Bea
“Our daughter can be very difficult to persuade to do things she
doesn’t want to do. For
get in a ‘tizz’
about putting on the prescribed
example, she will
hing worse.”
creams and cotton bandages. Of course the tizz makes her scratc
- Paul
What parents wish they’d known sooner
“That we could have been referred a lot quicker to a nurse
lead dermatology clinic, this was so helpful and came from a
conversation the school head teacher had with the school nurse.
To keep on asking for advice!”
- Bea
“That allergy testing and diet control could be effective in
maintaining the skin.”
- Faith
“GPs sometimes get it wrong…we were told for months “It’s just
dry skin, you don’t need anything, she’ll grow out of it…”. If we
used emollients early she wouldn’t have ended up admitted to
sick kids with infected facial eczema.”
- Anna
18
Top tips from parents
There is no magical cure for eczema so parents can feel they are going round
in circles trying to find something that helps. We’ve pulled together some tips
from parents, things that have worked for them…
Creams & Bandages
*
*
*
*
Use lots of emollient and apply as often as possible.
Keep up the cream regime.
Steroids first, then emollient.
It’s better to use steroids when things start to get red,
don’t wait to see if it gets better. It probably won’t.
*
Involve your child from a young age to apply creams
with you so it becomes fun rather than something they
hate.
*
Try applying the cream to the bottom half of the body
and then put pyjama bottoms on and then apply cream
to the top half. Cheap hand towels are great if you
need to quickly wipe creams off your hands between
applying creams and putting clothing on.
*
*
“When my son has to
wear his bandages
(vest, gloves and
leggings) we drew
on them to make
him a wrestler - this
is now his favourite
thing!”
- Caroline
Use bandages when the skin is cracked.
Wearing a sun protection suit to go swimming allows
you to apply creams but you don’t need to worry about
them turning into a slippery bar of soap!
Spot the Triggers
*
Keep a skin diary to help spot the eczema triggers e.g.
particular foods, woolly tights, swimming
*
Once you have found triggers make a list and make
“important” people aware of them e.g. school, clubs,
friends and family
*
Prepare the skin for ‘trigger’ situations e.g. extra cream
before swimming
*
*
Stay cool – overheating can cause itching
Avoid foods that you find irritate the eczema e.g. milk,
egg, citrus fruits etc.
*
Stress can play a big part in eczema and if you’re
stressed, your baby is stressed. Lots of cuddles,
smiles, playing and giggles.
*
If you think something is irritating the eczema get your
GP to refer you for patch testing so you can isolate the
allergen.
“No stress. When our daughter
is stressed with homework she
immediately starts to scratch.”
- Yelena
19
Top tips from parents
Day to Day
*
Try to get as much sun as
*
“Cleanliness is next to Godliness” – a well aired and
dust-free bedroom will help banish the dreaded house
dust mite. Polish surfaces with a damp cloth and a
few drops of lemon essential oil. Mop laminate floors
regularly.
possible. When warm enough
encourage your child to wear
shorts and sandals to school to avoid getting hot
and itchy.
*
*
Try specialist cotton eczema pyjamas.
*
*
*
*
*
*
*
Specialist suits need to be hand washed and cannot
be cut despite what the company reps tell you. If you
cut them they start to fray and ride up the arms and
legs. If they go in the washing
machine then they lose their soft feel.
“As our son’s eczema is at its worst
on his feet, a good pair of leather,
breathable shoes is essential. His
cost £50, which is a lot of money
but it makes a huge difference to
sweaty little feet. As soon has he
comes in from school I have him
steep his hands and feet in a basin
with hot water and a capful of Savlon
for 5 minutes. I then moisturize
his skin. He is then comfortable to
start and concentrate on completing
good quality homework. I’ve been
doing this for 6 months now and it’s
stopped the need for steroid creams
dramatically.”
- Joanna
Use non biological washing detergent.
*
*
*
*
*
No fabric conditioner.
Fragrance / soap free hand wash.
Limit perfumed products around the house.
*
Just because your child is not
scratching doesn’t mean they are not
itching themselves.
For example, crossing their legs,
moving around their cot etc.
*
Try not to say “don’t scratch” as it only
makes them scratch harder and faster
so they stop quicker for you.
*
Use a favourite toy to squeeze at night
time when they feel itchy.
*
Find fun ways of distraction when
itchy e.g. singing, dancing, painting or
favourite TV shows.
*
Encourage your child to stroke the itchy
skin instead of rubbing and scratching.
Natural fibres in clothes and beds.
PJs, teddy and creams in the fridge.
Keep teddies to one or two and wash each week
with the bedding.
Use pillow and mattress protectors.
20
Scratching
Try showers instead of baths.
Eat good food and drink plenty water.
Get plenty rest and sleep.
Try evening primrose tablets when skin is very sore.
Top tips from parents
Riley is allergic to dairy and since
cutting it out his eczema has improved
greatly.
Riley’s eczema affects his wrists,
hands, ankles and behind his knees.
Getting Help
*
Don’t take no for an answer with health professionals
(pester, insist and battle for the right treatment and
tests).
*
Find the right GP. Normally the right GP also has a
child with eczema.
*
etc.
It’s good to talk! Talk to friends, family, support groups
*
*
Talk to everyone you can find who has experienced
eczema.
*
allergies.
Make your dermatology nurse your new best friend!
Persevere and insist if you feel your child has
*
*
*
Get the family on board.
Ask for support.
Visit your GP regularly – if eczema is bad and shows
no signs of clearing with steroids the skin may be
infected and an antibiotic might help.
Words of Wisdom
Artie Bear has been a brilliant way to
help Riley cope with his eczema as
none of his friends have it. He tells
people that he has a special bear who
is just like him.
- Claire
*
Don’t let eczema define who you are or what you can
*
Trust your instinct, listen to your child (with regard to
*
Give reassurance and try not to be stressed when
do!
creams, reactions, foods etc.).
your child is upset and not wanting to use creams or
try different techniques.
*
*
Lots of praise and encouragement.
“Tell everyone you can about eczema
and how it affects the family. A
child approached mine and said they
couldn’t play together as he had a
disease he might catch!”
- Joanna
*
*
It’s difficult, but try not to nag! Your child will be
feeling guilty enough if they have damaged their skin
through itching.
Talk about it as a family
Stay calm!
21
The impact of eczema on siblings
Eczema affects the whole family, including siblings. This is what
some brothers and sisters had to say…
Holly
It was sad to see
him suffering
when it was at it’s
worst
- Jonathan
age 7
It’s a shame
sometimes to see
him so red and
itchy
- Alice
Niall
22
age 7
The impact of eczema on siblings
“It’s horrible
watching Finlay
scratch but he does
well not to scratch
(most of the time).
He copes well with
his eczema.”
- Maddie
“Both my brother and I have eczema,
but Cole’s is worse than mine. Cole does
not let his eczema get him down. He is
confident and usually happy. He has
to get his creams done every day but he
never moans. Sometimes he gets upset
when people tell him to stop scratching.
Cole does everything the same as his
friends. His eczema doesn’t stop him.
We have a new baby sister and we are
both hoping she doesn’t get eczema
like Cole.”
- Cameron
- Aaron
Not that fussed about it
- Rosanne’s brother
Rosanne
age 9
- Fiona
“Maia (age 11) says: because my
little sister has eczema, when
she puts her cream on she starts
crying because it stings her so I
go calm her down and give her a
hug and put her to bed and make
sure she is ok.
Andrew (age 7) says: sad because
my big sister has eczema and it
is hard for me to cope.”
- Kira’s siblings
23
Dermatologists’ point of view
Some Scottish De
rmatologists share
their tips,
challenges and w
hat they understa
nd of the impact
eczema has on fa
milies
(captured at an EO
S awareness sess
ion, Feb 2013)
Main challenges
as a Dermatolo
gist, when deal
child with ecze
ing with a
ma and their f
amily
*
*
*
Parents are afraid of
ste
*
*
roids
Conflicting advice
before coming to th
e hospital from othe
Some families think
r healthcare profes
food and diet are th
sionals.
e answer (over emph
allergies), though it
as
is
on
th
e role of
can be useful to inv
estigate
Time spent in cons
ultation is restricted
, which makes it ha
full impact on life
rd to take into acco
unt the
Parents looking for
a single cure
Tips/advice fr
om Dermatologi
sts
*
*
Bath daily, without so
ap
Apply lots of moistu
risers – apply in do
wnwards strokes an
from the tub
d use a spoon to re
move
Avoid triggers – heat
, dust, pets, etc.
Keep trying different
creams; tell us what
you don’t like to us
Input from Dermatolo
e, we can help!
gy nurses
Don’t continue elimina
ting a food if it’s no
t making an improv
Be aware there is no
ement to eczema
single cause
Don’t give up
*
*
*
*
*
*
What Dermato
logists underst
and about the
on the child an
impact eczema
d the family
Sleep disturbance
* De
* Itchycreaansed d concentration of child may impact performance at
school
* Limits the painful
* Conflict beparticipation in some activities e.g. swimming, sleep
overs, school
* Worry of aptween parent/child with treatments
* Self-cons pearance, particularly with facial eczema and using
greasy ointments
* Feeling ofciousness of the child can affect relationships
* Parents m guilt and frustration from parents
* Effect of sway feel they are neglecting other family members
eating /
*
24
exercise
How is Eczema Outreach Scotland helping?
“The night before I searched
the internet for info on a
support group, I had been
crying, feeling no-one
understood and I had nowhere to turn.”
- Julie
“Joining EOS
makes us feel we
aren’t alone.”
- Yelena
“We joined so Emma could
meet other children
with similar problems and
so we could meet other
parents with similar
problems.”
- Pete
“EOS is great, just to know
someone is at the end of the phone
to support and counsel us.”
- Eva
“The welcome pack was amazing, empowered me to ask for
assistance with benefits - which my child received and it
helps buy bedding and clothes.”
- Joanna
“Ciara is proud of
her medal from an
EOS outing.”
“The best thing about being a
member so far has been meeting
other families and my daughter
realizing she’s not the only one
and her eczema isn’t as bad as
some peoples’.”
- Anne
“It’s been good meeting people in the
area with similar issues in a relaxed
environment.
The welcome packs are FANTASTIC!”
Lucy
- Fiona
(age 6)
25
How is Eczema Outreach Scotland helping?
“I think EOS is great. I’ve met
new friends and been on most of the
outings. The best so far has been to
the Glasgow Science Centre.”
- Dominic (age 12)
“My daughter gets
excited when items arrive
in the post for her from
EOS. The information,
communication and the
welcome we received has
been warming.”
“Our daughter loves her
welcome pack, and it
was full of useful info
for us too!”
- Lesley
- Erika
“We decided to join to meet other people and gain
some new ideas and tips. We wanted to show Mya
she is not alone.”
- Elaine
- Mya
26
(age 5)
Living with me
Ava-Celine
hopes her
Eczema will
‘get better’.
Think that
says it all.
Scratching and scratching
While asleep in the night
Scratching and scratching
Lying waiting for the light
Waking in the morning
To find patches of redness
Waking in the morning
To find dryness and parchedness
Dressing for my day
Wearing materials, kind
Dressing for my day
Wondering whether people mind
- Julie
Slapping on some creams
Steroids and mixed potions
Slapping on some creams
With some bandages and lotions
Things that I have tried
Different diets, even herbs
Things that I have tried
Ways of lessening the nerves
What would I suggest
To a younger one with eczema?
What would I suggest?
Get to know yourself and Oompa!
For now I’ve come to reason
That I’m more than just my skin
For now I’ve come to reason
To forget some times within
The time when I requested
That my hands be tied at night
The time when I decided
That my skin gave all a fright
I’ve made myself a pact now
That helps me keep on track
I’ve made myself a pact now
Just takes a certain knack.
- Amelia, October 2011
27
t
e
e
m
o
t
e
c
n
a
h
c
e
Th r families
othe
n
o
i
t
a
m
Infor vice
& ad
Family Line:
0800 622 6018
Confidential
support
Invitations to our
free outings
Text:
07807 048 070
Office Tel:
01506 840 395
Email:
[email protected]
Or Join Online:
www.eczemaoutreachscotland.org.uk
Project Sponsored by
Registered Charity SC042392