Community AA Voices - personal stories Ella: Aplastic anaemia, social media, and me. A whistle-stop tour of my aplastic anaemia experience I first started to show symptoms of aplastic anaemia in the summer of 2017 just as I started to take my GCSE exams. Like other people who have had aplastic anaemia I was not aware of it beforehand and definitely didn’t suspect that I had it. Instead I thought that my body was just suffering from the stress of exams. However, after my exams had finished things got progressively much worse: I was feeling exhausted, light-headed, had big unexplained bruises, was very pale and fainted when I tried on my prom dress. I went to get a blood test done and at 3am that night I got a call to say that I would need to go into hospital straight away. For the next 2 weeks I was in hospital and after 2 bone marrow biopsies they were certain that it was aplastic anaemia. I’m very fortunate that my brother, Joe was a 100% match to donate his bone marrow to me. In October I spent 4 weeks in hospital having the transplant and then after an initial 1 week out of hospital I then went back in for 3 weeks due to having an infection. It wouldn’t have needed to take 3 weeks to treat but I had to pause treatment in between because I had a seizure caused by having a level of cyclosporine that was much too high. I’m out of hospital! I was finally out of hospital for good early December of 2017, after which I was able to enjoy Christmas at home and from then on everything would slowly improve as I recovered. I had chemotherapy when having the bone marrow transplant, which caused me to lose my hair. I’m sure I’m not alone in having this be one of the most difficult aspects to deal with as it only adds to the feeling of loss of control that’s so hard to handle. I wore wigs for quite a while as they helped with feeling confident again, I haven’t worn one since summer though and don’t plan on wearing them again. How social media helped me After I had been diagnosed with aplastic anaemia I made an account (@aplasticamemeia) on Instagram where I talked about my struggles with being ill with people who could truly understand what I was going through having been there themselves. When I talked to another person with aplastic anaemia for the first time it was really comforting as it made me feel less alone in what can be a very isolating process. I found talking to people about the frustration I felt surrounding my illness very helpful, whether it be my mum who spent lots of time with me in hospital or people online. It’s naturally very difficult to be open about an illness like this but I found it helped me during recovery and I felt more able to let people know when I needed to take a break or go slower with something. I had to miss exactly a year off school and so moved down a year. So far it’s been going great and I’ve settled in really well with starting my ‘A’ levels. I’m no longer taking immune suppressants and I’m feeling so much better than this time last year. My doctor even said that my blood counts were ‘perfect’!!! It’s been a tough year that I’m glad to be done with and I’m excited for the many healthy years ahead of me.