Understanding haemophilia Understanding haemophilia Contents Introduction 3 Haemophilia and your child 4 What is haemophilia? 5 What causes haemophilia? 5 Can females have haemophilia? 6 Carriers 8 Who is affected by haemophilia? 9 How severe is haemophilia? 9 Signs and symptoms of haemophilia 11 How is haemophilia diagnosed? 14 Diagnosis 14 Treatment 16 Port-a-cath 19 Managing joint bleeds with PRICE 19 Gene therapy 21 Possible complications of haemophilia 22 Inhibitors 22 Joint damage 22 Medical and dental treatment 23 Surgery Circumcision Dental care Medicines Vaccinations Bleeding disorder card Living with haemophilia 26 Sport and exercise 27 School, college and work 28 Travel 29 Pregnancy and haemophilia 30 Glossary of terms 32 About The Haemophilia Society 33 2 Understanding haemophilia Introduction This booklet is about haemophilia A and B. It gives a general overview of haemophilia and information on diagnosing, treating and living with the condition that we hope will answer your main questions. It has been written for people directly affected by haemophilia and for anyone interested in learning about haemophilia. If you are a parent and your child has recently been diagnosed with haemophilia you may be feeling quite overwhelmed. Remember, you’re not alone and many families are facing the same concerns and issues. Please do get in touch – we have lots of support and information available as well as services for parents and children. You can find out more via our website or Facebook pages, by emailing
[email protected] or calling us on 020 7939 0780. The outlook is now the best it has ever been for people with haemophilia in the UK.