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Old Fri Jan 4, 2019, 08:51 AM
Simon Miller Simon Miller is offline
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Join Date: Aug 2018
Location: Ireland
Posts: 2
Hi Odedara. I have a somewhat similar situation to you, I have Aplastic Anemia and PNH but I've had the AA for around ten years and the PNH developed in the last three or four years. I've only been on Eculizumab for the past year.

I went without Eculizumab for a while, really until the last minute and I was pretty much at death's door from organ failure due to blood clots. So I'm absolutely amazed at the difference it has made to me.

Unfortunately, I think you just have to adjust your acceptable level of quality of life and try to make changes to accommodate for living with a chronic illness like this. It's natural to expect to just "go back to normal" or "be cured" at some point but I really doubt that it's common for that to happen. Regardless of how effective the treatment is in the immediate sense, there is more strain on all parts of your body in the long term when living with this, I'm in my late thirties now and feel like I'm beginning to age quite quickly (although I imagine a lot of people in their late thirties feel like that!).

It's probably trivial advice to give but nonetheless I would say try to slow your life down and do things at the pace with which your body feels comfortable. It sounds like you have a lot of pressure in terms of your jobs, it could be worth considering a career change. I did that myself, I went from physically demanding work to working with computers and it made a huge difference. But I'm well aware that it can be difficult to do this in a practical sense, the bills don''t stop coming through the door.

I think it helps to be thankful for the fact that we're still getting a chance at life, particularly with Eculizumab which is a pretty recent and game-changing treatment. Although I know that it varies from patient-to-patient in effectiveness.

I'm not sure what the conclusion to this post is, but you should know that you're not alone in suffering through this, although it's not a common illness. People do like to say things like "don't let an illness dictate your life" but I honestly don't think that's helpful. I think if you can fit your life around it as best as you can then your quality of life will improve.

Always look on the bright side of life, as they say
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