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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

Feel more confident when talking about your condition to others

A Changing Faces Guide for Young People

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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

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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

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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

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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.

General doctor (GP) – you have probably met this person before – for

lots of reasons - they deal with all types of conditions and illnesses.

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.

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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.

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).

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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:

IS THERE A NAME FOR MY CONDITION?

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Write the name of your condition here. Or if there isn’t a special name,

write the words usually used to describe it:

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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.

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If you need to, draw more pictures or make some more notes in the box

over the page

Front Back

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More notes and pictures

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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

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?

Special Investigation Area 3:

HOW MIGHT MY CONDITION

AFFECT ME WHEN I AM

OLDER?

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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.”

“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.”

Like lots of things, there are two

sides to having treatment. For some

people, treatment can make a big

difference:

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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.

Fill in the boxes that are right for you to find out more

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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:

What happened in the treatments?

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What did the treatments change about me?

What did the treatments not change?

Is there anything else I can think of?

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I would like to think about other treatments. Then go to C

I am not interested in other treatments. Then go to Conclusions

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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?

What is the date of the treatment?

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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?

What difference will the treatment make?

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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?

Is there anything else I can think of? How do I feel about it? What else do

I need to know?

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Then go to Conclusions

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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

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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?

Who will I see? Who will be doing the treatment?

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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?

What difference will the treatment make?

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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?

Is there anything else I can think of? How do I feel about it? What else do

I need to know?

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Do I want to have this treatment?

Remember – even if you say ‘yes’ or ‘no’ now, it’s ok to change your

mind later.

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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

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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.

Please contact Changing Faces for further details of sources used. Review date: September 2019

Changing Faces

The Squire Centre

33-37 University Street

London WC1E 6JN

Telephone 0345 450 0275

Fax 0345 450 0276

Support Service Helpline 0300 012 0275

info@changingfaces.org.uk

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