Ellie Hudson at DBA UK explains:
Diamond Blackfan Anaemia (DBA) is a rare blood condition where the bone marrow fails to produce enough red blood cells. Most patients require either Blood Transfusions or Steroids to survive. There is currently no cure and some patients need a Bone Marrow Transplant. Lots of our patients have additional problems too, for example; heart conditions, mobility and learning difficulties, gut intolerances and hearing and vision issues.
Our charity supports families affected by DBA as well as research into why DBA occurs and how we can manage the disease better in the future.
We have an annual family conference weekend, where all families affected by DBA can join together to learn more about the condition. During the conference patients and families can attend group discussions and 1-2-1 sessions with leading clinicians to explore DBA and gain vital understanding of their children’s condition and how they can improve their quality of life. The annual DBA UK conference empowers parents with the knowledge of best practices from specialist consultants and experienced families enabling them to improve the care they receive. Parents are able to take away vital information on equipment choices, nutrition programs, tips for dealing with medications and updates on future developments in DBA care, all of which are otherwise unavailable to them.
DBA is delighted to have joined the Super Rare campaign this year – it will allow us to fundraise more, as well as create vital networks and awareness around the disease, which will support all our families.
I love cake! So, I will be holding a cake sale at my work, to inform people about DBA while having a lovely cuppa and some delicious cake at the same time!