If a child you love has been diagnosed with PH, it’s natural to feel frightened, uncertain, and full of questions. We’re here to help you navigate this journey.
Published with the help of experts in paediatric PH and families living with the condition, this guide aims to help you understand more about pulmonary hypertension and the care and support available.
Aimed at children aged three to nine, this special book has been written and designed by Maryam Hussain, whose little sister has PH. By following KiKi’s journey, it aims to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are.
Find out more about the inspiration behind the book by clicking here.
The following private Facebook groups are a valuable source of support and advice from people who truly understand what it’s like to love a child with PH. Each group has a strict screening process to ensure those requesting to join are genuine, so you can be confident of privacy. They are safe spaces to talk to other people with similar lived experiences.
This forum has been set up by ourselves here at the PHA UK and is exclusively for family members, loved ones, and anyone who provides care or support for someone with pulmonary hypertension. Request to join here.
This group has been set up independently of the PHA UK, and is run by a collection of parents. It is a dedicated space for parents and guardians of children with PH. Request to join here.
More than her diagnosis: Like so many others, the Hampshire’s had to push for their daughter Abbie to have the tests that would eventually lead to a pulmonary hypertension diagnosis. Hear mum Andrea explain why her 7-year-old’s health conditions will never define her.
Did you know? Our member magazine has a dedicated section for children with PH. Kids Corner carries questionnaires, columns, and fun activities for young ones. PHA UK members receive emPHAsis free three times a year – and it’s free to join too. Become a member here.
Growing up with PH: Kaylee (now Raya) Mynot was diagnosed with PH as a baby, and 20 years later she joined her mum to make a special video for our charity. Hear them share their experiences of a childhood with pulmonary hypertension.
