AA voices is the area of our website where people affected by aplastic anaemia share the stories they feel are important, in their own words.
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This final episode looks at the lack of public awareness about rare bone marrow conditions and the challenges in getting people to understand them. We highlight the work of the collective charities to raise awareness and why it’s so important to educate people about these conditions and what it means for those living with them. Read more
When conditions are rare, even healthcare professionals fail to recognise them. This episode discusses some of the struggles that people living with rare blood disorders can experience when trying to get medical care. How do we improve awareness of these conditions among healthcare professionals? How do we get doctors to listen to us? What specialist services are available? What do you do if you suspect you have a rare blood disorder but doctors aren’t seeing it? Read more
Loneliness is rife among people living with rare blood disorders. But there’s a whole community of people out there who are willing to connect. How can you speak to friends about your condition? What can you do to combat loneliness when you’re struggling to leave the house? How are people with similar conditions finding each other? What can you do to manage your condition when you’re out? How do you recruit friends to help you if things take a turn? Read more
Around two-thirds of people living directly or indirectly with a rare bone marrow condition feel they need more psychological support. Why is it important, how does it help and what resources are available? Read more
For parents of those with rare bone marrow conditions in particular, life can be exceedingly stressful. Just over three quarters of parents surveyed for the Rare Voices report said they felt anxious at least some of the time. How can parents manage this anxiety and ensure they’re giving their child the support that they need? Read more