“Hello, my name is Sharon M @pauln_josh_mom. I was diagnosed with cold agglutination disease, hemolytic anemia. It was around seven years and many doctors to finally be diagnosed. It’s a rare autoimmune disease caused by cold sensitive antibody. When blood or body is exposed to cold temperature proteins bind to red blood cells and destroy them, which causes severe anemia. Blood transfusions, rituximb infusions and iron infusions are part of treatment for myself. Others need more chemo to destroy the cells that attack the blood. No cure. No know treatment. It causes muscular pain, weakness, anemia, chest pain, dizzy, heart problems. It is not an inherited condition. I avoid air conditioning, outdoor cold weather, cold foods and drink.
Rare Patient Voice have given me stories of what others go through. It helps me be part of a special community. Together we are strong. Menu days spent sick in bed with no energy, nothing to do except pray to get through the day. Some days I feel okay to get out of the house for a few hours. Being alone in a world that doesn’t want to know or doesn’t understand is hard enough with us rare disease people. Every day is different on the energy you have due to being in constant attack of your own body.”