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Anyone here have Cold Agglutinin Disease
Autoimmune Diseases | Last Active: Feb 12 2:54am | Replies (11)Comment receiving replies
Welcome @tobytink, The National Organization of Rare Disorders has some information on cold agglutinin disease that might be helpful - https://rarediseases.org/rare-diseases/cold-agglutinin-disease/. You might also find the following organizations websites helpful for more information.
--- Cold Agglutinin Disease Foundation: https://coldagglutinindisease.org/
--- The Autoimmune Association: https://autoimmune.org/
Have you found any treatments or therapies that help?
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I have primary Cold Agglutinin Disease. I was diagnosed with AIHA in 2014 and was told about CAD in 2021. I have had many blood transfusions and Rituxin infusions since 2014. My disease appears to be getting worse because now I am in hemolytic crisis every year and sometimes less than a year. I have never fully had a workup for this disease. I am desperately looking for a CAD expert in the Ohio area. Any suggestions???