Cold Agglutinin Disease is a rare type of autoimmune hemolytic anemia (AIHA)in which the body's immune system mistakenly attacks and destroys its own red blood cells. This causes red blood cells to be prematurely destroyed (hemolysis) leading to anemia and other associated signs and symptoms such as extreme fatigue, muscle weakness, trouble breathing, dizziness, rapid heartbeat and pulse, bluish skin and pain, particularly in areas exposed to the cold. CAD patients are more susceptible to blood clots, strokes, and heart issues than the average person.
CAD affects both the liver and kidneys, which are having to filter the dead cells. The average age of onset is 58, though there are cases involving much younger and older people.
CAD can be caused by lymphoma and cold or flu viruses, but the cause in some cases is unknown.
Daily living is significantly impacted by CAD since patients suffer from symptoms of low hemoglobin resulting in varying degrees of anemia. CAD can lead to blood clots, heart attack, strokes and possibly dementia.
Patients always need to be vigilant about keeping warm to help reduce the likelihood of activating the cold-mediated antibodies, which cause cell death.
Acquiring a CAD diagnosis is difficult because the disease is very rare and unknown by many physicians.
DISCUSS ALL PROS AND CONS WITH YOUR MEDICAL PROFESSIONALS.
The following list describes treatments that are among the ones most regularly reported about Cold Agglutinin Disease and by the CAD patients who visit our website. This is not intended to be a comprehensive or all-inclusive list, and it may not be appropriate for your individual situation. It is intended simply as a guide for reference and discussion. Please be aware that all treatments, including blood transfusions, can have side effects, some known and others yet to be discovered.
Clinical Trial Information:
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the CAD Foundation.
U.S. Food and Drug Administration (FDA) approved Enjaymo (sutimlimab-jome), a prescription medicine used to decrease the need for red blood cell transfusion due to the breakdown of red blood cells (hemolysis) in adults with cold agglutinin disease (CAD).
Enjaymo is the first and only approved treatment in CAD and works by inhibiting the destruction of red blood cells (hemolysis) and helps address a serious unmet need for people living with this rare blood disorder.
Rituximab (aka Rituxan) is a drug given by IV infusion which in recent years has been found effective in treating CAD, and in some cases it is administered in combination with other drugs . It is also used in treating patients with Non-Hodgkins Lymphoma and other blood cancers.
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How do you explain to others what CAD is?
Many of us with CAD have learned to provide a quick description of our complex condition:
It is an auto-immune disease that makes your body’s immune system attack your red blood cells and destroy them, and cold temperatures trigger it.
I have a condition that makes me “allergic” to the cold, or we might explain that cold weather causes our anemia and fatigue, which can’t be cured simply by taking iron supplements.
It is estimated that there are approximately 10,000 persons with CAD throughout the whole Western Hemisphere.
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