Hi guys

I was diagnosed with myelodysplacia / PNH in june this year (still don't know exactly which one i have yet) and am keen to talk to anyone who is being or has been treated for this – i.e. long term use of steroids and the side affects, immune suppressents, diet, exercise, transfusions etc.

I am a 27 year old chick living and working in Melbourne and just can’t seem to find anyone (especially my age) who is being treated for the same thing.

Cheers

GG

Hello GG,

Welcome to REVIVE. I noticed you are yet to receive a response to your message...I guess it's safe to assume that currently there are no other members registered on REVIVE with Myelodysplasia/PNH....that's not to say they are not out there..they just haven't found REVIVE yet

I am sure if you didn't already feel alone as a young person living with this new diagnosis, you may now that you haven't received a response!. Even though currently the other REVIVERS may not have the same diagnosis as you, many of them will have the same thoughts and feelings that you do.

A blood cancer connect program was recently launched in Victoria, a support program which enables people to speak via the telephone to a trained volunteer who has been through a similar experience.

You may already be aware that on the 17th of January 2009 the Leukaemia Foundation in Victoria are conducting our very first patient conference in Melbourne. There are disease specific sessions including MDS, along with sessions addressing psychosocial aspects of living with a blood cancer.

Contact the Leukaemia Foundation on 1800 620 420 to enquire about the blood cancer connect program & for more information regarding the patient conference.

Cheers Anita

Hi GG,

I am a 30yo chick living in Brisbane and I was diagnosed with PNH about 4 years ago. I have just started receiving Soliris treatment, but previously was getting monthly transfusions since diagnosis.

In February I met a bunch of PNH patients from in and around Melbourne and together we have formed the PNH Support Association of Australia (PNHSAA), which also encompasses MDS and AA patients. They are all being treated at the Royal Melbourne. Up until then I hadn't met anyone else with PNH.

We are holding our first official meeting next week in Melbourne and I'm happy to give you details if you want to come along. Please email me at This email address is being protected from spam bots, you need Javascript enabled to view it if you want to know more. I'd love to hear your story and include you in our support group.

Cheers
Linda Charlton