General Message Board

• Hello to all people who access this web site. I live North of Auckalnd in a rural area. Yesterday my 12 year old son and 4 month old daughter headed for the city of Auckland. On our way we noticed a lady walking state highway 1 with a support crew. My son and I discussed and wondered what these people were raising awareness for. We even noticed her progress on our way back home.Little did I know sad news awaited for me to get home.A friends beautiful young daughter at the tender age of 19years had passed away Sunday the 9th of November 2008 in Perth WA. This was due to the exacerbation related to her life long battle against Cystic Fibrosis. Tonight I sat and read with absolute amazement the "in breif" section page 3 of today's NZ hearald and linked Emma Daken's gutsy effort to raise awareness. As we all struggle to accept Amba's death it is reasuring to know there are people raising awareness and are fighting this devaststating illness head on. Thankyou Emma, I only wish I were walking with you. As an RN I would now like to kick myself into touch and realy learn as much about nursing and supporting families who deal with this killer illness. Links and information how to support families would be much appreciated as my friend also has another 17 year old daughter with Cystic Fibrosis.Also where can I make a donation towards Emma's walkathon Thankyou

  Treena Stanford (13-11-2008)

• Hi Teresa
  To be honest - most people with CF do not receive any CF care in the primary health sector. When they have an exacerbation they go straight to their CF clinic and many have 'open admission' to their CF wards. I guess if there were an issue it would be having GPs admit when they dont know much about the condition and making sure they educate themselves and provide a QUICK referral to their local specialist. Cheers Kate

  Kate Russell CEO (05-11-2008)

• Hi Kate, Im a registered nurse who works in a general practice...im giving a talk to 6 GP's next week on CF channel from a molecular biology point of view as ive just finished a degree in this area(molocular biology). I would like to use the opporutunty to express the needs of CF families when they attend the GP.
  
  Is there some common need that we could address better or a common problem that families with CF kids met time an again when acessing their GP services?
  
  with thanks

  Teresa (05-11-2008)

• Hi Clyde
  Contact Melissa on 03 3235383

  Kate Russell CEO (07-10-2008)

• Would like info on support groups in my area Chch

  Clyde (08-09-2008)