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,
I am in a the same boat as you... I dont have Myelodysplastic disorder i have Myeloproliferative disorder (i have too many platlets and white cells)I am also in Melbourne and have not found anyone else in my age group with MPD. (Im 25) which hospital are you treated at?? i was at monash under prof Eng Gan but just read some not so good info in him in google turns out he has a dodgy past with his female patients soo... i am moving over to the Alfred and going to be seeing Andrew Spencer.
hope to chat soon
Gillian

Hi Gillian

Thanks for your post - apologies for not getting back to you sooner, I am currently getting ready for my one month trip to vietnam and hong kong and things are crazy at work as you can imagine!

I am currently being treated at St Vincent's hospital by Harshal Nandakur who is a great specialist - he also works very closely with a specialist name Jeff Szer at the Royal Melbourne who specialises in PNH cases (its been 18 months since I have been diagnosed and it looks like its more PNH than MDS at this stage). Like you it was hard to find info and a 'support group' about any of this and it was only until three months ago that a lovely chick called Linda got in touch with me from this website - she was looking for PNH patients as she and three other people are starting to organise a support group/charity - most of them are aged between 28 and 35 and very informed and it is just great to understand how different people live with these rare diseases. I have had a quick google search of Myeloproliferative disorder - we are very much a total opposite however we have similar symptoms! What treatment are you currently on - so far im on steroids (blah) and regular transfusions but as soon as i come back from holidays i am starting a new 'trial' drug that will stop me from getting regular transfusions and hopefully pump up my energy levels.

I would like to hear more about what you have and generally how things have been going up to this point - i know for me im pretty independant type of person and not into talking feelings etc but what i have found is that its sometime great to have someone who you can kind of relate to so you know when things are starting to turn crap for a while someone has been through it and it just gives you more confidence to keep going - so if you are free for a chat or drink or lunch or something please let me know. I will be flying off to sunny vietnam on tuesday but perhaps we can chat after then.

thanks again for your post

Grace