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