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.

Conditions mentioned in this episode: Shwachman Diamond Syndrome, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemoglobinuria

Further Reading:

super-rare.org theaat.org.uk/emotional-wellbeing-support pnhuk.org dcaction.org sdsuk.org

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.

Conditions mentioned in this episode: Paroxysmal Nocturnal Haemoglobinuria, Fanconi Anaemia, Shwachman Diamond Syndrome

Further reading:

fanconihope.org sdsuk.org pnhuk.org theaat.org.uk super-rare.org

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 are people with similar conditions finding each other?

Conditions mentioned in this episode: Fanconi anemia, Aplastic Anaemia, Paroxysmal Nocturnal Haemoglobinuria

Further Reading:

super-rare.org theaat.org.uk pnhuk.org fanconihope.org

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?

Conditions mentioned in this episode: Sickle cell anemia, Fanconi Anaemia, Shwachman Diamond Syndrome

Further Reading:

super-rare.org theaat.org.uk fanconihope.org sdsuk.org togetherwecan.uk

For parents of those with rare bone marrow conditions, life can be exceedingly stressful. How can you manage this anxiety and support their child well?

Conditions mentioned in this episode: Fanconi Anaemia, Shwachman Diamond Syndrome, Dyskeratosis Congenita.

Further reading:

fanconihope.org sdsuk.org dcaction.org theaat.org.uk super-rare.org

What is it like living with a rare blood or bone marrow disorder? In the first episode of this series, we discuss what it’s like to live with a rare condition day-to-day.

Conditions mentioned in this episode: Sickle cell anemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemoglobinuria

Content note: This episode discusses miscarriage and pregnancy loss.

Further Reading:

super-rare.org theaat.org.uk pnhuk.org dcaction.org togetherwecan.uk