What’s it like living with a rare blood or bone marrow disorder? Or parenting a child who is? Our brand new podcast invites people living with these conditions to share their perspectives and advice for those facing similar challenges.
How do you carry on feeling positive when someone you know dies as a result of the same condition? How do you explain why your child can’t go to a party? How do you speak up at the hospital when you think doctors need to do something different? Stories of strength and real, practical advice for super rare people and families.
What is it like living with a rare blood or bone marrow disorder? This episode sets the scene with the series by discussing what it’s like to live with a rare condition day-to-day, from home life, work, going out, dealing with the healthcare system and more.
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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?
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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?
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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?
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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?
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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.
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This podcast was funded by the National Lottery Community Fund, with thanks to players of the National Lottery.
