MDS Survivor
The goal of this blog by Aldeane Sööt is to “let you know there is someone out there who has gone through what you are going through.” She is a survivor of a bone marrow transplant at the Fred Hutchinson Cancer Research Center in Seattle, Washington in November 2002. There is also a section of her blog written by her caregiver and husband, Pete Sööt, to give other MDS caregivers his point of view.
http://www.mdssurvivor.com
Hi! I was just diagnosed with MDS–Refractory anemia, only dealing with too few red blood cells. White blood cells and platelets are normal. I’m looking to connect with others in this category of MDS. I’d like to know if or how rapidly this condition might worsen and how to make the most of life with MDS Refractory anemia/ De Novo MDS.
Can anyone help me connect?
Dave Johnson
Dear Dave,
You may wish to check out Marrowforums. It’s a set of discussion boards for people affected by bone marrow failure diseases, including myelodysplastic syndromes. Hopefully, you will be able to connect with other patients with refractory anemia MDS through the forums.
My son KGerard has just been told he has mds and of course he is very very upset, also his Wife and oldest child 14 and his family. He has low counts in red white and platelets…sounds pretty bad to me. i can see this can be gotten by his Son or Daughter also. Waiting for results June 11th. They have said it is worse than they originally thought. Working from home right now.
Hi Mary,
We’re very sorry to hear about your son’s MDS diagnosis. We hope his physicians are able to manage his low blood cell counts.
How were his results from June 11? We wish him the best.
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