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#1
Mon Apr 14, 2008, 12:22 AM
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Help....What Does This Mean????
My three-year-old granddaughter, Sadie, was diagnosed a year ago with Severe Aplastic Anemia. This past week another person in my small town(less than 200 people) has been diagnosed with it...a fifty-year old man who lives four blocks from us.
 What does this mean and what should I be doing? Who should I be talking to? When Sadie was first diagnosed we searched our brains trying to find the cause...now we want to know what these two people have in common and are the rest of us in danger. Could it be chemicals in our water? I don't know???? I would appreciate any advice.Thank-you in advance, Denise-Nana of Sadie Last edited by nana of sadie : Mon Apr 14, 2008 at 08:14 AM. 
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#2
Mon Apr 14, 2008, 02:14 AM
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Denise,
Your county health department might be the place to start. Incidence of aplastic anemia in the U.S. is estimated to be from 1 to 5 people per million per year. You could alert them to the unusual incidence of aplastic anemia in such a small town. Something similar happened last year in northern San Diego County (California) when it was reported that several children were diagnosed with aplastic anemia. See, for example, http://www.nbcsandiego.com/health/11264809/detail.html. The CDC got involved too but could not find enough information to define the area as a disease cluster. One of the problems with the low EXPECTED frequency of aplastic anemia, is that anything more frequent is very worrisome. It's unlikely that there is much you can do for yourself or your family to prevent aplastic anemia other than to avoid the known causative agents like benzyne and some pesticides. If you decide to contact any local authorities, please let us know how they respond. Hope this helps. Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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#3
Thu Apr 17, 2008, 01:31 AM
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I am so sorry for your granddaughter's recent diagnosis - it breaks my heart to hear about children being diagnosed with this disease....please keep us updated on her condition, hopefully things will get better for her soon....
Michelle
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#4
Sat Apr 19, 2008, 12:40 PM
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Cluster Study
They tried to do a cluster study on the town and county that I live in. A very small population for the area they were studying and about 10 or more people with AA. But, they just didn't have enough evidence of cause I guess. I still feel it was worth a try, because if they had proved any cause for all of these cases (like the chemical plant nearby), it would have possibly helped some, and at least helped us to understand possibly how we got AA.
Connie
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Connie, diagnosed with AA in Nov. of 2000. Had ATG treatment with short remission. Then had ALG treatment in 2001. Am in remission as of 10-2007.
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#5
Mon Apr 21, 2008, 07:19 PM
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Hi Denise,
sorry to hear about your granddaughter. I know exactly what she is going through. I recieved a bone marrow transplant when i was 7 and i'm almost 16. I know she will make it. I'm here to talk if you need to. Julie Perrotta
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#6
Tue Apr 22, 2008, 02:14 AM
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Testing our Water
Someone is coming to test the water in our small town....the Department of Enviromental Quality...or something like that. We are hoping for some answers. Thanks to all of you for responding. Sadie is doing okay....counts rise and fall weekly but stay at safe levels. We are so thankful!!! Fifth BMB is in the near future....last one showed a cellurity of 50%. We hope this one will be higher.
Thanks again, Denise, Nana of Sadie
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