[RosP]

In early June my daughter had a full blood count test due to extreme tiredness, bruising and night sweats. We recently discovered that she has PNH. For a few months her consultant has waivered between AA and MDS, as her Platelet count is 12 - 20, haemoglobin averages 10 and wbc averages 1.8, with neutrophils 0.8 - 1.1. Recent tests have identified a likely genetic mutation and her consultant is now almost positive that the disease is AA. Over the last few months she has had weekly platelet transfusions but these have been stopped for now and her counts remain stable as above. The medical team are 'watching and waiting', however they cannot explain the extreme fatigue that she suffers. I wonder if any of you can help me with this and advise any treatment that has worked for you, with similar counts. We are waiting to find out if either of her sisters can be a stem cell match, though transplant is not certain as a treatment plan yet. It breaks my heart to see my 16 year old daughter struggling to complete school work for her important exam year, unable to join in sports and activities and having no energy to enjoy life. She is currently at school 3-4 days each week and this is draining her. Any ideas???