Aplastic Anemia is a disorder where the bone marrow does not produce sufficient blood cells.
Hi.Anyone else in here having trouble getting diagnosis...first it was TTP,ITP,then PNH,then multiple myeloma,now it is Aplastic anemia.been on horse serum and cyclosporine...doesnt seem to be working.anyone out there have any advice?Thanks.
Should have been 'NOT enough AA transplants to have reliable statistics.
Chitown35 - just checking in to see how it is going with you. I did have the r-atg treatment in fall of 2010, then the h-atg in January of this year. The treatments worked tremendously well, but then failed, the second after only 4 months. So I am going for a stem cell transplant now at MD Anderson, where I have been being treated for the aplastic anemia and original diagnosis of T-LGL. As I understand it once the two atg treatments fail, a transplant is really the only long term option. Can't say that I am happy about the statistics - apparently the aplastic anemia is cured in only 50% of the cases and the short term mortality (first 30-60 days) is around 15-20% in leukemia patients. I am guessing there are enough AA tranplants to have reliable statistics. I do have an exact sibling donor so that's a good thing. No particular symptoms other than extreme fatigue and of course the hypocellularity in the bone marrow used to diagnose AA. White counts drop significantly and are supported by Neupogen, hemoglobing drops very slowly and my platelets are excellent.
My aplastic anemia was caused by using cyclosporine for another condition t-cell Lgl. Last year I was tranfusion dependent through dcember. My platelets were between 7000-20000 and my hgb was between 7-8 for a couple months and I was transfusion dependen through December. I recived h-atg treatment in July and was weened off of cyclosporine. My counts are slowly starting to rise on their own. I still feel tired but last lab had my anc at 600 my hgb at 11.6 and platelets at 59000. I haven't had Neulast in a little over 2 mos.My doctor seemed happy with the results. I'm not sure if this mentioned to you as a treatment or not but hopefully the numbers keep increasing.
I too have t-lgl and my treatment with cyclosporine caused me to get aplastic anemia. My Dr seems to think a bone marrow transplant will cure both of them. So far I have tried methotrexate,cyclosporine, h-ATG, and neupogen and neulasta. I have been getting transfusions fairly regularly the last couple months.
Hello, all. I thought I would throw this out to see if we can get something started. I have been diagnosed with T-LGL Leukemia (see the rareshare forum on that disease), but at my last visit, my oncologist said that it could also be the very early stages of aplastic anemia. So with that in mind, I wanted to see what this forum might have. The treatments seem to be pretty similar, so I don't know that it makes much difference what I have. In fact, the oncologist said that it is quite possible that these two diseases and another (NPH) are all different expressions of a single underlying factor.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.
FIND YOUR COMMUNITYOur rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.