Story about Autoimmune Hemolytic Anemia / Cold Agglutinin Disease .

Type Donath-Landsteiner

Nov 1, 2023

Year Condition Began: 2002


I was taken to hospital at the age of 2 years with signs such as blood in my urine, severe fatigue, absenteeism, pain and pale appearance. There I was diagnosed with paroxysmal cold haemoglobinuria of the rare Donath-Landsteiner subtype (ratio 1:1,000,000). For 2 weeks I received injections several times a day, as well as plasmapharesis. The most important thing was to avoid exposure to cold (medicines, syringes, etc. had to be warmed to 37°C before and during administration) and this continued beyond the hospital stay. In summer, hands and feet were not allowed to be exposed to air with a temperature of +20°C and colder (extra shoes from Canada, for example). To this day, I have no restrictions, but I still avoid the cold and vaccinations can serve as triggers, which is why I have to pay attention here, e.g. I am not allowed to have TBE, Corona was unclear and only possible after consultation and consideration, but so far there have been no abnormalities :-)

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