MPN specialist in Australia?

[ControlGroup]

Hi all. I’ve been lurking on the forum for a few months as I went through the process of being diagnosed with ET Jak-2. I have pronounced symptoms which led to investigations.

I am in a rural Queensland, Australia and the specialist options are very limited.

I am seeking information on possible MPN specialists in Australia.

many thanks, Danyelle.

[hunter5582]

There are several MPN expert docs listed on this site. mpnforum.com/list-hem./ Like many people in rural areas, you will likely have to travel to see a MPN Specialist. It is definitely worth the effort.

You may want to reach out to the folks at MPN-Mate. they likely know more about MPN care in Australia. mpn-mate.com/

All the best.

[ControlGroup in reply to hunter5582]

Thank you so much for sharing this valuable information. I am very grateful.

[Lifam]

Hi, I'm from Adelaide South Australia , was diagnosed with ET JAK2 4 years ago. I'm only on public health system, but have been blessed that my haematologist is a Professor and have been looking after me very well. I would suggest if you can contact the Leukaemia Foundation in S Australia, where I believe can provide you information about any MPN specialists you could go to. All the best. Xx

[ControlGroup in reply to Lifam]

Thank you so much for this. I’m so glad you’re receiving such good care. It must be a great relief.

I will get in touch with the leukaemia foundation as you recommend. I really appreciate the advice.

Wishing you all the best, too.

[Lifam in reply to ControlGroup]

All the best to you too. Please keep us update. Xx

[socrates_8]

Hey Danyelle,

Yes, it's true that MPN Specialists in Australia are unfortunately even rarer than having an MPN, or so it seems...

However, there are a few work arounds too... hence, all is not lost of course...

This is a List that can be found off our MPN-MATE.COM website:

mpn-mate.com/services-4/

mpnforum.com/list-hem./

Unfortunately, for some reason, every time I recommend new Listings however, they do not remain 'Listed"?

I will send you a Private Message (PM) shortly to share some other useful options...

Best wishes

Steven

(Sydney)

[ControlGroup in reply to socrates_8]

Thank you so much, Steven. All these replies from Australia are making me feel not so alone!

I look forward to your message.

[Phantasia]

Hi Danyelle,

I am in Tasmania and also have ET. Same issue here. No MPN specialists.

An MPN specialist I have heard of is Dr. Cecily Forsyth at Central Coast Haematology in Gosford, NSW.

She is considered one of Australia's leading authorities on MPN's.

I am in the public system in Tasmania and happy enough with my specialist for now.

I don't know if Dr. Forsyth does telehealth but you could ask your GP for a referral.

Good luck.

[ControlGroup in reply to Phantasia]

Thank you so much for this recommendation!

My current specialist is a bit hit and miss so I really appreciate the tip.

Hope all is well with you.

[Pachena]

Hi Danyelle and welcome to this great supportive group 😃

I live in Brisbane and see Dr Rebecca Cleary. She is a haematologist and has an interest in MPN’s.

I see her mostly in person tho she also is happy to meet via zoom/video calls or audio calls. She continues to keep in contact with me when we are overseas which I’ve found a great support.

I hope you find someone convenient and just right for you 🌸

[ControlGroup in reply to Pachena]

Thank you so much for this recommendation. She sounds very supportive. I’m feeling so grateful to be given these options for better care. And so much great information on this forum.

I have so much to discuss with the GP now I am armed with more information.

Warmest wishes to you.

[Pachena in reply to ControlGroup]

You’re welcome 🌸

Dr Cleary is great with questions and will research and come back to me if she is unsure.

Also she is very happy for me to email any questions or to call if I need any support 😃

[Hatchie]

The top MPN specialist in Qld are Dr Caroline McNamara and Dr Steven Lane both at the RBWH.

[sewingchick]

Hi Danyelle

I live in rural NSW and travel to Sydney RPAH in Camperdown . There is a specialist haematology unit there. Have had wonderful treatment for 15 years .

All the best to you.

Liz