Support of family
My name is Amanda and I am the Secretary of The UK CCHS Support Group. Our Son l, Finlay, has CCHS (Ondine's Curse).
my bipap regime
I am the Lead Family Adviser of the UK CCHS Support Group
I am the Lead Family Adviser of the UK CCHS Support Group
Being cared for by my mom and step dad
gastric sleeve surgery to lose weight
Diligence in the health of my child to be properly ventilated every time she sleeps and needs that extra support
I take my inhalers almost every day
New bi pap
He had a tracheostomy for 5 years and now has a mask.
my sister and brother have same condition
I have a 26 year old son with CCHS
I have a 26 year old son with CCHS
Great care from my doctors
being able to reduce my pressures due to weight loss
Support from the CCHS Familiy Network!
I don't let what people say bring me down anymore
Being in contact with others with this condition
A good sleep pattern helps manage daily life and being aware when he may need additional ventilator help.
family and friends support and understanding
My nurse Barbara who has been with me for 15yrs
using Allevyn guards to protect the bridge of my nose
Meeting CCHS families at CCHS conferences and being in continual contact with them and meeting new families to help them along the journey
When I had nurses they brought me do much joy. They were the best part of this disability.