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Old Sat Feb 27, 2021, 11:44 AM
Junior48 Junior48 is offline
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Join Date: Nov 2020
Location: New York
Posts: 6
Natalie,

Neil and Hopeful bring up good points. Youth is certainly a benefit. most importantly, you NEED to see a doctor that specializes and/or has experience in dealing with Aplastic Anemia and PNH. Treatments vary, and to the inexperienced Doctor, symptoms can present similarly. as you can see from Neil's story with MDS.

I wouldnt be too concerned about the timeline, i have not read or heard anything negative about waiting to administer. it is all situation dependent and watch and wait could be a viable method. Many people can live and function daily with very low counts. I don't know too much about transplant other than it has come a long way and it is usually more successful the younger you are. However, from speaking with my sister's Dr. and reading treatment options, it seems that most AA Doctors recommend ATG treatment before transplant.

My sister had horse ATG about 10 years ago. She got treated several months after diagnosis but her counts were continuing a downward trend so it was time. she only needed that one round and has been on cyclosporine since. That line of treatment seems to prove most effective according to the research.
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JR, sister dx with AA 2010; ATG 2011; PNH clone increase in 2019[60%]; current treatment; blood thinner/Cyclo
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