Cold Agglutinin Syndrome

[judymic]

Hi, this is my 1st post. I've had Cold Agglutinin Syndrome for nearly 20 years. I've never met anyone else with it. I've belonged to SRUK and previously RSA for a long time, as they provide me with tips and gadgets to keep me warm!

I have auto-antibodies in my blood that in cool temperatures attack my red cells and break them up. I get blue extremities, and virtually every part of me will go blue, despite layers of clothing. I also get Raynauds as often my fingers go white, etc.

Is there anyone else out there with this?

[Alice1956]

I have never heard of your condition. Sounds like it must be really uncomfortable. Thanks for sharing your story.

[Hidden]

Hello Judymic,

I am a newbie to HU and quite happy to meet you. I've had CAD (Cold Agglutinin Disease) since 1998, but not as a primary. You can read my story on the homepage. I was diagnosed in 2015 with Chronic Lymphocytic Leukemia with Cold Agglutinin Autoimmune Hemolytic Anemia. I suffer from the same symptoms you do when it comes to cold weather. Fortunately, I live in a warm location and I only have a couples of months when this poses a problem, as you know, for my feet, toes, face, etc...

You might be interested to know there is a new drug in phase III clinical trials called Sutimlimab which is supposed to be working wonders for CAD.

Take care and best of luck!