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Old Thu Apr 13, 2017, 08:16 AM
shellybean shellybean is offline
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Join Date: Nov 2016
Posts: 12
I had my appointment yesterday and it has been confirmed that I do not have aplastic anemia. They are still unsure but are considering MDS. My bone marrow cells are ragged and they do not develop properly. They also found that the telomeres on my chromosomes are too short for my age, so they are doing further tests to determine if I was born with a faulty gene or not. The types of tests they are using have only been developed within the last 5-10 years so I'm lucky that they're available to me. These genetic tests are going to take a while so my next appointment isn't for 3 months. I may not get a diagnosis so if I don't I will join the 100,000 genomes project. My blood levels are low but not severe enough to require treatment, so that's good news. I'll be monitored every 3 months to see if my blood remain stable or to see if it changes. All in all it was a relief to know I am okay for the time being and won't need any treatment. Again it was frustrating not to get an answer, but this is obviously a bit more complicated than I first thought.
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