5 months ago I was diagnosed with atypical Haemolytic Uremic syndrome (aHUS). At the time of diagnosis I was extremely anaemic had high creatanine levels low platelets and evidence of haemolysis. I had a biopsy that showed end stage renal failure and was experiencing the associated symptoms (fluid retention, lowered urine output etc.)

Treatment with eculismab was started as well as several plasmaferesis's. I am also taking prednisone (weaning off), vitamins, blood pressure tablets, furosemide and micera and blood transfusions when needed. I am also waiting for genetic testing results.

I soon after had an atrial fibrillation episode and was then found to have left ventricular heart damage (I think it is enlarged). (The doctors are not sure what caused this, they suspect the aHUS can anyone confirm?)

Since then my red blood count has risen to 100 (from 40) and platelets are back to normal. However these two counts drop randomly (about once a month) without evidence of haemolysis or blood loss which is puzzling my doctors.

I would appreciate any contributions of knowledge or suspicions of possible underlying or different diseases I could have.

I understand aHUS is extremely rare and there is not many recorded cases (compared to many other diseases). I can supply any extra information if needed about my condition provided it is not personal.



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