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Welcome to the first edition of our 
CF Adult and Family Newsletter...

We listened and we heard you!

There has been resounding feedback that Members of CFACT would like more information on CF related topics. Therefore, we introduce this new bi-monthly member newsletter that will connect you and your family with information focusing on one CF topic each edition. We will also provide you with an update on local and national advocacy activities and our support service updates.

Edition 1: CF Sexuality – Reproduction, Screening and Genetics
 
 
 

Reproduction & Fertility

SPILL (a NEW website by CF Victoria) 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. 

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 for both adults with CF and parents. They will connect you to a Genetic Counsellor to discuss your situation and options.

Where assisted reproductive services are required Genea is the most commonly referred provider. There are alternatives interstate for example those treated in Sydney may be referred to the Westmead Fertility Clinic.
 
 
 

Check out these resources -

FACT SHEETS
Reproductive Information: Female 

Reproductive Information: Male 

WEBSITE
www.spill.org.au 
 
 

Individuals can request to be tested if:

  • They are planning a family
  • Have a family member diagnosed
  • Their partner already knows they are a carrier
 
 
 

Carrier Testing

With an individual with CF in your family there is an increased chance of having symptomless carriers of the CF Gene in your immediate and extended family.

All ACT and southern NSW residents can seek advice on genetic screening from their GP and request a referral to The Canberra Hospital Genetics Team to access genetic screening fully subsidies by Medicare.

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

Genetics

Cystic fibrosis is caused by mutations in the CFTR (ABCC7) gene [1–3]. The most common mutation is F508del, previously termed ΔF508, which accounts for approximately two thirds of all CFTR alleles in patients with CF.

It is important to know your CF Genetic Mutations so that you can keep up to date with the latest treatments that may be specific to you (see more in Advocacy below).

But there are also some other interesting things you can learn too. For example this abstract from 2008 - Consensus on the use and interpretation of cystic fibrosis mutation analysis in clinical practice - shows the geographical distribution of the most common mutations. If you have a rare mutation it may provide some insight into where the gene was passed down by your ancestors.
 
 
 
 
 
 
 

General Business

Advocacy

A revolutionary new drug for people living with the most common mutation of cystic fibrosis (CF) - two copies of F508del - is on the Agenda for the Pharmaceutical Benefits Advisory Committee (PBAC) Meeting in March 2016.

Orkambi is a combination drug that uses lumacaftor to bind the defective CFTR Gene and enable it to be transported to the surface of the cell and ivacaftor (Kalydeco) to enhance the function of the CFTR protein once it reaches the cell surface.

In less than a month the PBAC Consumer Comments portal will close! Now is the time to make your voice heard on the Okambi debate. Go to the PBS Website  and submit your comments. 
 
 
 
 
 


For all updates on the Okambi debate so far (being led by CF Australia) visit the website
 
 
 

CF Meds in Australia
 
 
 
 
 

Coming Up

Keep an eye on the what's on calendar for the latest events and activities with CFACT here

CF ACT AGM - 13.04.16
 
 
 
 

To receive this Newsletter you must be an active member, (by completing the Annual Member Survey). However, all previous members will receive this communication during the current renewal period.

Your membership with CFACT is currently: 

Please feel free to forward where appropriate to your extended family and friends. 

If you would like more information on any of the above, please contact Heidi Prowse or discuss with your CF Clinic Team. You can also send in your questions on our next topic: Income Support - Social Services, Concessions and Superannuation

e. heidi@cfact.org.au || m. 0437 485 454.

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.
 
 
 
Cystic Fibrosis ACT
PO Box 909
Civic Square ACT 2608
e. info@cfact.org.au || m. 0437 485 454
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