When you find out that you, a friend or a relative has LCH (Langerhans cell histiocytosis) you may find it a bit
confusing, worrying or scary and we are sure that there will be many questions.
Here is some information that we hope will answer some of those questions.
What is LCH?
LCH is one of several diseases that involve cells in the body known as histiocytes.
There are three main types of blood cells in your body:
• Red blood cells which carry oxygen around the body
• White blood cells which fight infections
• Platelets which help the blood to clot to prevent bleeding and bruising
A histiocyte is a type of white blood cell which normally helps to fight infection.
These histiocytes gather together in large numbers causing damage to healthy parts of the body.
Is LCH a cancer?
There are some similarities. Some patients with LCH may not need treatment others may and this will include similar treatments to those patients diagnosed with cancer.
When you, a friend or a relative are newly diagnosed with LCH it may come as a shock – it is after all a rare illness.
You may be feeling that it is a confusing time for you just now and you will have lots of questions about treatment and how it will affect you.
If you have been diagnosed with LCH there will be lots of people that will want to take part in deciding what is best for you, and if you want to just leave them to it that’s OK or if you want to take part in the discussions then that is alright as well.
You can ask questions whenever you want to and talk to your doctor to get the facts and if you are feeling unwell do not suffer in silence let someone know.
It is important to keep in mind that having LCH:
Is not your fault – you can be sure that nothing you did (or didn’t do) caused your illness.
You cannot catch LCH – You can spend as much time with your friends and family as you want.
LCH does not mean you have to change everything – you may be able to keep going to school and seeing friends. Even if you’re in hospital, staying in touch with your friends and doing activities you enjoyed before can help you through this time.
To make sure you get the help you need from your parents, talk to them and let them know what they can do. You may want to be left alone for a while, or fancy a tasty treat or snack or just talk even if it may seem to you a difficult conversation, being open and honest with your parents is a good idea. Be honest tell them the truth about how you are feeling, any worries, and anything that that confuses or embarrasses you. The more you tell them the more they will be able to help you.
It is good to talk for you and them!
Brothers and Sisters
Brothers and Sisters may not want to worry you or your parents with questions.
Do not forget that sometimes brothers and sisters may think that you are getting a lot more attention than they are as they may not understand the reasons why that would be the case, so they may have difficult questions in their minds.
Is there another trusted adult, an aunt or uncle that might be able to answer some of their questions? If not ask your nurse, social worker or your teacher if they go to the same school.
If you feel up to it keep in touch with friends, especially if you are not in school as much.
Friends can sometimes be unsure of what to say to you when you are unwell so if possible, try to keep them in the loop with a text or email, and let them know if and when they can visit. Ask them to keep in touch even if they cannot visit- as it is always nice to know that your mates are thinking of you, and you will reply when you can.
LCH may affect how much you are able to go to school.
Going into school as often as you can helps you keep up to date with your schoolwork and it also lets you stay in touch with your friends and may make things feel more normal.
At hospital and home
If you are in hospital for a while, teachers can arrange to deliver work and textbooks to you, and for finished work to be returned for marking.
Returning to school
You may be looking forward to going back to school however it is natural to feel worried about returning if you have been away a little while.
If you are due to take exams, the exams officer will arrange any help you may need. It is often possible to organise ‘special access arrangements’.
You may also find relevant information applicable to children on the Siblings pages or on the Useful Links page.
You may also like to join one of our facebook groups. HistioUK – discussion or HistioChampions – celebration.
The website Euro-Histio-Net has information on its Kids pages for the following:
o Symptoms and Signs of Langerhans Cell Histiocytosis
o Examinations – What will happen in hospital?
o Physical Examination
o Blood Tests
o Urinalysis and more
o Growth Hormone Tests
o Biopsy and Bone Marrow Examination
o Follow the link: http://www.eurohistio.net/e1570/e1747/index_eng.html
Please be advised that all the information you read here is not a replacement for the advice you will get from your consultant and their team.
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