Patient Comments: Cold Agglutinin Disease - Experience

Question:

Please share your experience with cold agglutinin disease. It may help others with the disease. Submit Your Comment

Comment from: Msparrow, 19-24 Female (Patient) Published: September 06

I started getting sick from cold agglutinin disease at 16 (rare) and was hospitalized every January (I live in Maine) for 3 years. I would stay for weeks in the hospital living off oxycodone or a strong pain medicine, steroids and blood transfusions. This disease causes extreme pain and tiredness throughout your whole body and it affects a lot of other organs. Taking extreme measures to stay out of the cold or consuming cold things is very important. It is also important to find the underlying issue if any.

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