We know that the bullying of children with unusual appearances is all too common in schools.

Finding out

image002This 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

contentimage_image695

Why find out more?

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

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.

MARI

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

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.

How can I find out more?

BE A DETECTIVE!
  • 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
  • Make any extra notes in your notepad, including any things you still need answers to. You can even add photos if you want
  • 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?

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.

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.

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).

Special Investigation Area 1: WHY DO I LOOK DIFFERENT?

Copy this form and fill it in!

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?

Write the name of your condition here. Or if there isn’t a special name, write the words usually used to describe it.

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.

front-back

Special Investigation Area 3: HOW MIGHT MY CONDITION AFFECT ME WHEN I AM OLDER?

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.

Copy this chart and fill it in!

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 4: WHAT ABOUT TREATMENTS?

Like lots of things, there are two sides to having treatment. For some people, treatment can make a big difference:

“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.”

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.

Copy this form and fill in the boxes that are right for you to find out more

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?
What did the treatments change about me?
What did the treatments not change?
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

 

 

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?
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?
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?
Then go to Conclusions

 

 

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

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?
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?
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?
Do I want to have this treatment?

Maybe??

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

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

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!