Cold Agglutinin Disease is an autoimmune disorder yeilding the high presence of circulating antibodies directed against red blood cells.
Hi Heather, I also suffer from CAD. I have been treated with prednisone also but more recently with Rituximab which is given by infusion. This has successfully kept my haemoglobin at a better level and more stable. It doesn't work for eveyone but definitely worth a try. You have 1 infusion every week for 4 weeks. Other advice is to really keep warm - don't drink cold drinks or food straight from fridge. Let me know if you want to know more. Best wishes, Katherine
My husband has been suffering from what his hematologist calls cold agglutin hemolytic anemia for at least 3 years (at first we thought it was repeated bouts of the flu). Does any one have any advice for slowing down recurrences? Any treatment options besides prednisone? Thanks -- Heather
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.
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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.
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