Australians with bone marrow failure diseases

[Sarah H]

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]

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]

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]

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

[BigMick]

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

[Cheryl C]

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]

Count me in.

[Sunny's Mummy]

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]

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.