Parent of child with Pulmonary hypertension

[Jonprice1976]

Hi all,

Is there anyone out there who also has a child with PH.

Please get in touch as I have some questions.

Thanks

Jon

[Katinka46]

I am sorry to hear that. It must be very scary for you and your family. I understand that there is a patient forum specifically for people with PH. And an organisation: PHA. Have you tried them? There are people here with PH, adults, but I think they also have lung disease.

I hope you feel confident that your child is getting the best possible care and treatment. I know there is a specialist unit at GOSH for paediatric PH.

All the best

K

[Jonprice1976 in reply to Katinka46]

Hi, thanks for your reply.

I have joined PHA uk too & have asked a similar question there.

My daughter was in GOSH for 6 weeks, so we know the team there very well & know just how good they are.

I'm looking for parents to chat to, so hopefully I'll find someone soon.

Regards

Jon