Sexuality, Reproduction & Genetics

See our Member Newsletter on this topic (Jan 16)

Reproduction & Fertility

As people with CF live longer and healthier lives, many more are becoming parents. The first point of call when it comes to reproduction is your CF Clinic Team who will connect you to a Genetic Counsellor to discuss your situation and options.

Where assisted reproductive services are required you may be referred to Genea or if you receive treatment in Sydney may be referred to the Westmead Fertility Clinic 

The CF Federation has produced these two resources about reproduction for people with CF.

Reproductive Information: Female 

Reproductive Information: Male 

Other resources
SPILL has relevant, targeted and age appropriate information in both text and video formats, for adolescents with CF who are just learning about their sexual and reproductive health.

For more information, visit - www.spill.org.au

 

Genetic Screening 

One in 25 Australian Caucasians carry the cystic fibrosis gene mutation and over 80% of parents unknowingly pass it onto their child. For advice on genetic screening speak with your GP and seek a referral to The Canberra Hospital Genetics Team.


Newborn screening
In Australia all babies are screened at birth for cystic fibrosis. A Heel Prick test (small blood sample) is taken about three days after birth. If this test returns positive, genetic testing of the most common CFTR genes will be done. Finally a sweat test will be carried out to measure the amount of salt in the sweat and it is with this test that a diagnosis will be made.

Please note: newborn testing picks up almost all babies with CF (about 95%), however some rare forms of the gene may be missed.


Prenatal testing
Special tests can be carried out during pregnancy to determine if the baby will have cystic fibrosis. They are available if you already have a child with cystic fibrosis or if you or your partner are genetic carriers for CF. You need to discuss these tests in more detail with your GP.


Carrier testing
Genetic carrier testing is done for people who don’t have cystic fibrosis to find out if they have a mutation in one of their CFTR gene copies.

  • You may request to be tested if:
  • You are planning a family
  • You have a family member (close or extended) diagnosed
  • You partner already knows they are a carrier

Find out more, here is an information booklet produced by CF Victoria #Knowingyouroptions

Disclaimer: The information contained herein is provided in good faith. However accuracy of any statements is not guaranteed by Cystic Fibrosis ACT. We provide the information on the understanding that persons take responsibility for assessing relevance and accuracy. Individuals are encouraged to discuss their health needs with a health practitioner.