a changing faces guide for young peopleskinsupport.org.uk/sites/default/files/finding-out.pdfit...
Post on 29-Aug-2020
3 Views
Preview:
TRANSCRIPT
1
Finding out
This guide will help you to:
Find out more about what has happened to you
Learn more about your condition
Find out what treatments there are
A Changing Faces Guide for Young People
2
Feel more confident when talking about your condition to
others
LINKS TO SECTIONS:
Why find out more? 3
How can I find out more? 5
Who are my witnesses? 6
Special Investigation Area 1:
WHY DO I LOOK DIFFERENT? 9
Special Investigation Area 2:
HOW DOES IT AFFECT ME? 11
Special Investigation Area 3:
HOW MIGHT MY CONDITION AFFECT ME WHEN I
AM OLDER? 14
Special Investigation Area 4:
WHAT ABOUT TREATMENTS? 16
What did I find out? 30
3
4
As you probably know, it can be hard to deal with a condition that
makes you look different. Finding out more about your condition may
help you to understand and handle it better. It also means, when
people ask you questions or you want to talk to someone about it,
you’ll have the right words and information to use.
Here are some examples of some young people finding out more
about a condition:
Al was born with a cleft lip and a cleft palate. He had an operation
when he was younger and this left a scar on his top lip. He wears
braces on his teeth and wears a hearing aid. His doctor gave him a
booklet which explains all about his cleft palate and lip. It’s helped
him understand more about what happened to him, why he needs
braces and why he can’t hear so well.
Why find out more?
AL
5
Mari has vitiligo. She has white patches where there is no colour in
her skin. It doesn’t hurt and it’s not contagious, but new patches can
appear. Before Mari knew more about what it was, she’d get
embarrassed if people asked about it. She used to say she’d spilled
toothpaste on herself. Now she understands about vitiligo she feels
more confident about answering other people’s questions.
Jo has a birthmark on her face and neck. She thinks laser treatment
could help. To find out more, Jo and her dad visit a laser clinic. They
find out that laser treatment could make Jo’s birthmark lighter, but
it wouldn’t remove it completely. This treatment would mean lots of
sessions over a long period time – it would take several years before
it was finished. Also, the treatment can be painful. The information
helps Jo decide what to do. She will try laser treatment for a few
months to see what difference it can make. She probably won’t have
it for her whole birthmark, just the bit on her cheek.
MARI
JO
6
Get your pen and paper ready (all good detectives make notes!)
You’re about to start a very important case… it’s all about YOU!
Look at the SPECIAL INVESTIGATION AREAS and decide which
ones you want to explore
Build up your case by ‘interviewing’ your ‘witnesses’
Maybe you want a Deputy (a parent, carer or friend) to help and
to be your sidekick? Or you can do it by yourself – it’s up to you!
For more complicated things, you may need to talk to a GP
(general doctor) or specialist doctor
Fill in all the important information in the boxes you see later –
take it with you when interviewing your witnesses
How can I find out more?
Make any extra notes in your
notepad, including any things you
still need answers to. You can even
add photos if you want
7
Afterwards, when you have gathered lots of evidence, it might be
good to look through all your notes again and talk it all through
with your parent or carer. This will help to get the facts straight
in your head – show any questions that still need answering.
YOU ARE VERY CLEVER! YOU WILL SOLVE THE CASE!
Who are my witnesses?
Parent or carer – well, you know who they are! This is a good place to
start - your mum or dad or carer (and other family members) will
probably have some information about your condition.
Here is a list of the people you may need to
interview (in a friendly way, of course). Your
parents or carers will be able to help you make
any appointments.
8
General doctor (GP) – you have probably met this person before – for
lots of reasons - they deal with all types of conditions and illnesses.
Specialist doctor – these are doctors who know all about a particular
part of the body or a certain condition. You might need to see
several specialists to talk about different things. Sometimes this
person is called a ‘Consultant’, or they might be called after the
name of the area they work in, like ‘Dermatologist’ (skin doctor) or
‘Surgeon’.
Nurse – nurses see lots of people and might be able to give you more
information
Changing Faces Practitioner (CFP) – a person who works for Changing
Faces who you can talk to – about your condition and how you are
doing. Although a CFP can’t tell you what treatments to have, they
can help you to think about it all.
9
Other people with the same condition – sometimes it’s good to talk
to someone who has been through similar things to us. Or they may
have had treatment and be able to tell you what happened with
them. You might meet them at hospital – or through a support group
(you can ask a CFP about finding a support group).
10
Special Investigation Area 1: WHY DO I LOOK
DIFFERENT?
HOW DID I GET MY CONDITION? Tick the box(es)
that are right for
you
I was born with it
It developed after I was born
I had an accident
I had surgery or treatment
I was ill
Add any other notes here:
11
IS THERE A NAME FOR MY CONDITION?
Write the name of your condition here. Or if there isn’t a special
name, write the words usually used to describe it:
12
Special Investigation Area 2: HOW DOES IT AFFECT
ME?
Think about the different parts of your body. On the ‘bodies’ on the
next page, draw or colour the parts of you that are affected by your
condition (front & back). It’s up to you how you do it, as long as you
know what it means.
Your condition might affect only one part of your body… or it
might change other parts too
It might change how a part of you looks
You might not be able to hear, see, speak or smile as easily as
other people
You might limp or not be able to use your hand or your arm
properly
Maybe you can’t go out in the sun very much (maybe draw the
sun with a cross through it)
It might affect your whole body (draw a circle around it all)
Add clothes and hair and other things to make it look like you.
13
If you need to, draw more pictures or make some more notes in the
box over the page
Front Back
14
More notes and pictures
15
It might seem a bit of a scary question, but it could help you to know
what is going to happen as you grow up.
Your parents or carers might know some of the answers to these
questions, so ask them first. Then you might need to speak to a
doctor or a specialist too. Ask your parents or carers to help you
with making an appointment.
WILL MY CONDITION… Circle YES or NO or NOT SURE
… change as I grow up? YES NO NOT SURE
… affect me more? YES NO NOT SURE
… affect me less? YES NO NOT SURE
Special Investigation Area 3:
HOW MIGHT MY
CONDITION AFFECT ME
WHEN I AM OLDER?
16
If you say YES or NOT SURE, you might want to add some questions
and make some more notes here. How might it change? How might it
affect you more or less?
17
Special Investigation Area 4: WHAT ABOUT
TREATMENTS?
“I’ve got burns on my face and body and I’ve had lots of
operations. I still have lots to come. I won’t ever look like I did
before the accident, but I still think it’s worth it.”
“I had a cleft lip when I was born. It’s been repaired, but I
have a scar above my lip and my nose is a bit flat. I will have
some ‘touch up’ surgery later, though you’ll always be able to
tell I’ve had a cleft.”
But, sometimes people have treatment which doesn’t work as well as
they’d hoped. This can make them disappointed, upset, or even angry.
“The operations are painful and it gets to me sometimes. And,
sometimes I feel like it’s not worth it. I talk to dad about it.
He says it’s ok to feel upset. He’s good to talk to.”
Like lots of things, there are two
sides to having treatment. For
some people, treatment can make a
big difference:
18
“I get angry because I’m sick of having to use my cream. I have
to put it on each day and it’s annoying. Sometimes I don’t do it.”
Things you might not know…
Some treatments work best at a certain age
And some take years to complete
There isn’t a treatment for every problem
No treatment will work every time
More than one type of treatment may be needed
Treatment can often make a big difference
But it can’t always change everything or make things how you
might expect
Treatment might affect you in other ways.
You might have had treatments already, or be about to have
treatment. Or you might be thinking about it – or you might not.
19
Follow the paths by answering ‘Yes’ (and fill in the boxes) or ‘No’
below to help you think about treatment. If you answer ‘No’, you can
move on to the next section straight away. Try asking your family
first. Then, later, you might need to ask a GP or a specialist or other
people (or if you like, your parents or carers can ask for you).
A. Have I had any treatments? Yes
No.
Go to B
If the answer is Yes, fill in the boxes below:
Write down the treatments:
Fill in the boxes that are right for you to
find out more
20
What happened in the treatments?
What did the treatments change about me?
What did the treatments not change?
21
Is there anything else I can think of?
I would like to think about other treatments. Then go to C
I am not interested in other treatments. Then go to Conclusions
22
B. Am I due to have treatment? Yes
No
Go to C
If the answer is Yes, fill in the boxes below:
Write down the treatment:
What will happen?
23
What is the date of the treatment?
Who will I see? Who will be doing the treatment?
How long will it take? How many times will I need to go? Will I miss
school or other things?
24
What difference will the treatment make?
What will the treatment not change?
What other affects might there be, like scars or other changes?
Will it affect other things like moving, talking, eating, sleeping,
hearing or seeing?
25
Is there anything else I can think of? How do I feel about it? What
else do I need to know?
Then go to Conclusions
26
C. Are there any treatments (other
treatments) for my condition?
Yes
No.
Go to
Conclusions
If the answer is yes, write down the treatments here:
Now go to D to find out more about the different treatments
27
Remember, each treatment will be different, so you might want to
do a sheet D for each one and answer all the questions to help you to
decide what is best for you. And the answer might be that you don’t
want to have the treatment at all.
D. What I need to find out about treatment!
The name of the treatment:
What will happen?
28
Who will I see? Who will be doing the treatment?
How long will it take? How many times will I need to go? Will I miss
school or other things?
Will I have to have follow-up appointments and, if so, what will
happen?
29
What difference will the treatment make?
What will the treatment not change?
What other affects might there be, like scars or other changes?
Will it affect other things like my movement, talking, eating,
sleeping, hearing, sight, etc?
30
Is there anything else I can think of? How do I feel about it? What
else do I need to know?
Do I want to have this treatment?
Remember – even if you say ‘yes’ or ‘no’ now, it’s ok to change your
mind later.
31
Conclusions: What did I find out?
TICKLIST OF YOUR FINDINGS
I have found out more about what happened to me
I have learnt more about my condition
I have found out what treatments there are
I have decided what I want to do about treatment
I feel more confident when talking about my
condition to others
32
Double check in your notebook to see if there are any other things
you have written down. Are there any other questions you would like
answered? If the answer is yes, talk to your parents or carer about
how you might be able to get answers to these. Or, get in touch with
us at Changing Faces.
Being prepared and knowing what to expect can help you feel more
confident, but there can be a lot to think about. Finding things out
and making decisions about treatment are not easy – and it all takes
time and energy. Remember, it’s good to talk things through – talk to
a parent or a carer or a Changing Faces Practitioner - to help you to
work through it all, especially if you are feeling worried or confused
by any of the information you discover.
WELL DONE! You have now completed your investigation!
Supporting and advising
Changing Faces offers information, advice and support to children, parents and
adults with scars, marks or conditions that affect their appearance.
Informing
We work to improve policy and practice in organisations. Through staff training
and consultancy we help to create fair and inclusive environments.
Campaigning
We campaign for social change. We aim to promote a society in which people are
treated fairly and equally.
Changing Faces
The Squire Centre
33-37 University Street
London WC1E 6JN
Telephone 0845 4500 275
Fax 0845 4500 276
Support Service Helpline 0300 012
0275
info@changingfaces.org.uk
www.changingfaces.org.uk
Registered Charity No. 1011222
Charity registered in Scotland SC039725
Company Limited by Guarantee
Registered in England and Wales No
2710440
This guide is also available, on request, in
plain text and on CD
© Changing Faces, September 2013
Please contact Changing Faces for further details of sources used.
Review date: September 2016
top related