Alexandra, 26, was 17 when she was diagnosed with acute myeloid leukaemia (AML). After two transplants, Alexandra is living with graft versus host disease (GvHD), which is gradually improving with treatment.
‘For me the GvHD is more of an issue than the leukaemia ever was. I get cramps and muscle spasms and they can be painful, but it’s not too bad. Generally I get a lot more headaches these days, and I get tired easily. Joint restriction is the main issue, though. My knees and hips are okay, but it’s pretty much everywhere else.
‘I’ve had to give up hobbies, like yoga and kayaking, due to joint restriction, and I’ve lost a lost of muscle. Certain drugs affect your appearance quite drastically over short periods; cyclosporine causes excessive hair growth, while steroids make you gain weight. I’ve been very self-conscious at times and have dressed differently to try and hide my changing features. People don’t always want to ask, or don’t feel able to ask, about what’s happening to me. But I prefer to be open and speak to people about my disease
‘After completing my master’s, I started my first job at an organic horticultural charity. I go out and teach people about composting. It can be hard because the job can be quite physical at times – wheelbarrows are tough. But the people I work with are so supportive and understanding.
‘I struggle to find clothes that I’m comfortable wearing in this warm weather because I don’t normally get my arms or legs out. But just in the last couple of weeks I’ve actually been thinking – you know what? This is me and I have to accept it. The longer I live with my altered appearance, the more at ease I feel. I am never going to be normal but why try to hide it? I’ve won my war and I have the scars to prove it.’