Diagnosis of a child
Please remember that your child’s primary immunodeficiency (PID) or secondary immunodeficiency (SID) is not your fault. You did not cause or will this upon your child.
Having an immunodeficiency does not mean the end of their world or yours.
Things might feel unfamiliar until you find a way to speak about and understand what they have, but your child is still who they are and who they have always been.
The jumble of letters and numbers, which form your child’s diagnosis, will eventually stop feeling as overwhelming as it does now.
There is so much help and information out there, much of which you will find on this site or be directed to from here.
From the best therapies to help you and your child, to the systems and funding available, we will point you in the right direction.
You might not want to know it all now. We will be here when you are ready to find out more.
You are not on your own.
Searching the internet
You have found Immunodeficiency UK on the internet, so you are already researching what you know is wrong or could be wrong with your child.
The internet is a powerful tool for diagnosis and support, but there is a lot of misinformation out there and some of the things you read might be frightening.
Think about having a trusted friend or family member do a quick sweep for you first. They could give you a short list of what you might find when you look for yourself.
Perhaps have someone with you when you first look.
Remember, genetic conditions can manifest themselves differently in different children. Every one of us is unique. What holds true for one child may not affect your child.
Try to use only reliable sites and sources of information.
Ask your health team for recommendations about where to find more information.
Look at websites attached to children’s hospitals like Great Ormond Street.
Try to find official charity or research groups, clinical studies, parent-led Facebook groups, sites that are not public and moderated rather than open to all.
Bookmark anything you read that is informative and has a positive view because you might want to find that place again.
Personal stories are just that, personal.
It is important to know that children with the same condition can be affected very differently. What they and their family experience is very likely to be different from you. We all want to educate ourselves, but it can be emotional and overwhelming. Don’t feel you have to know everything immediately. Take some time away from your screen, it will still be there tomorrow.
Support for you
To help support you at this critical stage we would recommend this website Wellbeing Hub – Rareminds. We work with this organisation to give mental health support to our community. Here are some webpages that may help:
