Learning about your child’s immunodeficiency

Since primary immunodeficiencies are very rare, most people will not have heard of these conditions, so there is a lot for you to learn about the nature of the condition, your child’s diagnosis and best treatment practice. It is essential to feel comfortable with your medical and nursing team, so that you can ask the questions you need to and build up your understanding. It is also a very personal decision to decide how many other people to tell about the condition – your family, your friends and your colleagues.

Our tips are:

  • Get your health team to write down the name of your child’s condition and learn how to say it.
  • Ask your medical team for leaflets and information on your child’s condition.
  • Take care of yourself while searching for information online. There is lots of misinformation on the internet. Follow our tips ‘How to search the internet and not freak out’.
  • Educate yourself slowly. Take a look at our section on ‘The basics’.
  • Immunodeficiency UK provides accurate, up-to-date, medically reviewed information, so have a look through our site to find out more.

This information was written by Dr Penny Titman, Consultant Clinical Psychologist, Great Ormond Street Hospital for Children, London (January 2014).