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-   -   Australians with bone marrow failure diseases (http://forums.marrowforums.org/showthread.php?t=3764)

Sarah H Fri Aug 9, 2013 08:30 AM

Australians with bone marrow failure diseases
 
Searching for Australians with Aplastic Anaemia, any severity or other BMF disorders/diseases.
Looking for best way for us to band together for awareness and support

Glenda H Sat Aug 10, 2013 10:52 PM

I have MDS
 
Hi Sarah

I live near Rockhampton and have MDS which has affected my red blood cells, white blood cells and platelets. Since last Oct I've been dependent on transfusions (red blood cells) usually every 4 weeks. I am under a heamatologist who comes up here from Brisbane. I am on Exjade for Iron overload because of the transfusions. I am 58.

SLB Sun Aug 11, 2013 12:10 AM

Hi! I live in Brisbane & had a BMT on the 6th of March this year at the Royal. I had MDS that progressed to AML. I, too have had many transfusions but about 3 weeks ago for the first time since I was diagnosed in feb 2012, all my blood counts were in normal range!!!! (Hgb has been sitting at 115 for 3 weeks now)!! Not sure about for AA but I did participate in the telephone forums for MDS run by the leukaemia foundation.

Sarah H Wed Aug 14, 2013 04:36 AM

Hi guys
thanks for replying!
hopefully we can build a little Aussie community:)

BigMick Wed Aug 14, 2013 07:28 AM

Aussie Blog
 
I have only joined this forum today but I am happy to participate in an Australian Forum. - Cheers BigMick

Cheryl C Fri Aug 16, 2013 06:37 AM

Hello fellow Aussies. I have MDS too and am very interested to join the group. Please let me know what you have in mind.

Honeybun Thu Aug 29, 2013 08:14 AM

Count me in.

Sunny's Mummy Thu May 21, 2015 10:39 PM

Sunny 3 years old
 
Hi

We are in Newcastle. We haven't been diagnosed yet. His bone marrow test was abnormal. Hypercellular bone marrow, mild cytopenias. 3 monthly blood tests.

Thanks
Fiona

Odedara_pankaj Sat Dec 29, 2018 10:10 AM

male from Perth.
 
Hi, I am male 32 from perth. I am diagnosed with AA and PNH in 2016. I am on Eculizumab for last more than 2 years.


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