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Old Fri Nov 10, 2017, 04:41 AM
whackerswalsh whackerswalsh is offline
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Join Date: Nov 2017
Location: Dublin, Republic of Ireland
Posts: 8
Living with an AA sufferer in Ireland

Hi All,

Firstly I wanted to say how impacting & informative this forum has been for me and the wealth of information everyone has contributed to. I have learnt more about this silent disease just by reading everyone's personal stories. So thanks guys!

This is my first post....

My husband (60) was diagnosed with SAA back in January 2016, since then he has had 2 ATG treatments (first partial response) and continues on with Cyclosporine daily. Like most of us on this forum the first reaction to diagnosis was "SAA whaaaat??" We had never heard of this term or condition...for us it was a whirlwind few months, and continues to be.
He has been back in hospital with chest infections, and coupled with AA he was also diagnosed with Haemochromatosis, which they call the Celtic disease. Too much iron in the blood. So with all the blood transfusions he is totally overloaded with iron on top of everything. And he cannot take ExJade it just makes him very sick.

I am reading everyone's personal story and am quite taken aback just by the stats and medical information you are armed with. Ireland has a very small pool of people who have this condition, currently in the main hospital where my husband is treated there are less than 10 patients. We have never met any of them.

I cannot emphasize the great care and attention from the medical team, but I get frustrated at the lack of information forthcoming. My husband always had a thirst for life, and thankfully his "glass half full" optimism has stood to him but he is a terrible communicator when it comes to his own health. So for me as the primary carer I have had to battle with him and his consultant/team to get any sort of information about the severity of the condition, his progress to date, where do we go from here, or are there any clinical trials etc.... this is not a negative on the medical team but I think that given there are so few people in Ireland with AA we don't have the experience or numbers for continuous research and development of the disease.

So I wonder if there are any current members who are living in Ireland and sharing the same experience?

I would love to talk to similar carers about how they cope and any information that could help me better fight the good fight.

Once again thanks all, this forum really has been so inspirational.

WW
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