CCHS Website

Becoming Independent

Do people with CHS need to have someone nearby while they are asleep?

Individuals with CHS need some system whereby their sleep position, airway or ventilator settings may be manipulated in the event of an alarm on either the pulse oximeter or their ventilator. Such a system needs to either alert a carer, parent or partner, or ensure the individual is woken. The proximity of the carer, parent or partner who responds will depend on the layout of the home and use of electronic surveillance, intercom or monitors.

Can people with CHS drive?

There is no reason why individuals with CHS cannot drive.

Individuals with CHS can undertake work, ie paid employment, according to their abilities. As with any child at school, the employer should be made aware of the medical condition, so that appropriate interventions can be taken in the event of emergencies.

Can people with CHS have sex?

Yes, and they have had pregnancies and their own children.

Yes, although there should usually be counselled by a doctor with expertise in genetics before becoming pregnant, in order that they can learn about the risks of the new infant having CHS. If pregnant, the mother with CHS should have increased monitoring of their condition.

Alcohol has been shown to be linked to sudden death in people with CHS, and it should be drunk sparingly, if at all.

Alcohol is dangerous for patients affected by CHS and deaths have been reported in this population with the assumption of alcohol: teenagers are particularly at risk since they commonly drink alcohol without adequate awareness. Also little quantities can cause sleep and respiratory arrest. Friends must also be aware of the diagnosis of CHS and of the need of mechanical ventilation in case of sleep so they can give an help. It is very important that patients affected by CHS avoid the assumption of alcohol in any case.

Can people with CHS smoke cigarettes?

Smoking of any type is discouraged in CHS and any other condition affecting breathing and the lungs.