You have found Immunodeficiency UK on the internet so you may be already researching the primary immunodeficiency (PID) that is affecting your child.
The internet is a powerful tool for 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 come up with a shortlist of what you might find when you look for yourself. Perhaps have someone with you when you first look.
Remember that PID 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.
Our tips are:
- Try to use only reliable sites and sources of information.
- Ask your immunology consultant or nurse where they would recommend finding the information.
Look at websites attached to children’s hospitals, such as Great Ormond Street.
- Try to find official charity or research groups, clinical studies, parent-led Facebook groups, things that are not public and that are moderated rather than open to all.
- Bookmark anything you read that is informative and has a positive view because you will want to find that place again.
Personal stories are just that, personal.
It is important to know that children with the same PID 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.
Listen to yourself and come away when you feel like that.
The information will still be there tomorrow.